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 group.

@jackie1222

I'm dealing with nerve damage from the waist down. I am a very open person even with the embarrassing stuff. I hate it though of course. Oh I'm new to this whole group.

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Hello @jackie1222, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. It's OK to hate it…not sure any of us are particularly fond of neuropathy or nerve damage 🙂

Are you able to share a little more about your diagnosis or if the nerve damage was from an injury?

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@ahayes

@bkruppa Nerve enteapment is notoriously hard to image. I never had imaging or "tests" to diagnose my problem. Doctors simply ruled out everything else and also used ultrasound guided peripheral nerve blocks to diagnose. This is a common method of diagnosing the problem of entrapped nerves. Everytime I got peripheral nerve blocks of the affected nerves (which I had done many times over 3 years of working towards a resolution to my pain, by many different and well known specialists), the pain went away 100% until the nerve block wore off. Once the nerve block wore off, the pain returned in full force. No other modality or conservative treatment ever removed my pain entirely like a nerve block.

There are some newer imaging techniques such as MRN (MR Neurography) that are not always covered by insurance and still also aren't entirely accurate – i.e. the imaging could show nothing and your wife could still have a nerve entrapment. Thus, I never did this type of imaging.

I do think you should pursue an EMG/NCS. Even if it is negative, you'll want to show a doctor you had the tests done, and please know the doctor you ultimately work with on the nerve entrapment issue may want to repeat some or many tests again at their own institution. Doctors tend to like tests from their own institution. However, to gather evidence and build your own case, go ahead and get the NCS/EMG now. Those who understand nerves know they aren't always accurate. Just do it to get in the door with a doctor in this field.

A diagnostic ultrasound guided nerve block is another test you need to have done. Interventional pain management doctors, who are often anesthesiologists, perform this. They may also want to do other tests prior to a nerve block, and just let them. Please, as you read this response, remember it took me 3-4 years to get as far as finding the right doctor to operate on my entrapment and for me (and my doctors) to believe I really did rule out all other possible conditions.

I'd find a good interventional pain management doctor at a large teaching hospital. Begin to work with them and know the first one may not be the one you need. Try to build rapport with one and go through all their tests. They will eventually get you to the right answer and right tests, but this all takes time.

You can also google search for nerve entrapment programs or mentions on academic hospital websites. The reason I suggest a larger practice is they are worth their weight in gold if you find a good doctor. I chose my surgeon because if the operation didnt help my pain, he would still help me, as would my pain doc, vs. leaving me high and dry after a failed surgery. It's good to have a team to support you and your wife through this.

Happy to help and answer any more questions. I'm here to help others not suffer for years like I have. There are great docs to help you, but know it will take time and also please get multiple opinions and rule out all else before surgery. I've tried all conservative measures and had so many tests. If helpful I can list them all out to you.

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Hello. Which Doctor did you use?

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@rkbunn

Hello. Which Doctor did you use?

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Hi Jackie! I suffered this monster for years. Sat on a donut for 14-1/2 hours. Until……I started on anti-seizure medicine for an unrelated matter and I got relief immediately. I didn't take the medicine for long. You must tell your doctor.

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@rkbunn

Hello. Which Doctor did you use?

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Hello @rkbunn and welcome to Mayo Clinic Connect. I can see you are interested in connecting with @ahayes to learn which doctor they used.

Do you have pudendal nerve entrapment neuropathy as well?

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I believe so. I can't seem to get a firm diagnosis. I have been having sharp shocks in the vagina with walking. I do also have a bulging disc with annular tear that I am getting an ESI for tomorrow. Praying this is the cause, but it is at L5 and that is not the nerve root that would normally cause this kind of pain. It has gotten debilitating as I am fearful of walking due to the intense pain when it happens and it is happening multiple times a day when I walk. I have seen a GYNO who did an ultrasound. Said all looks fine and it must be orthopedic. I work with orthopedic surgeons. They say if this doesn't work then it must be GYNO. So I am just praying this works. If not, looking for guidance on where to go next to see specialist who actually specialize in pudendal nerve issues. I have also been treating with a pelvic floor therapist.

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@rkbunn

I believe so. I can't seem to get a firm diagnosis. I have been having sharp shocks in the vagina with walking. I do also have a bulging disc with annular tear that I am getting an ESI for tomorrow. Praying this is the cause, but it is at L5 and that is not the nerve root that would normally cause this kind of pain. It has gotten debilitating as I am fearful of walking due to the intense pain when it happens and it is happening multiple times a day when I walk. I have seen a GYNO who did an ultrasound. Said all looks fine and it must be orthopedic. I work with orthopedic surgeons. They say if this doesn't work then it must be GYNO. So I am just praying this works. If not, looking for guidance on where to go next to see specialist who actually specialize in pudendal nerve issues. I have also been treating with a pelvic floor therapist.

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@rkbunn I have read some of your posts while on leave from Connect following a sixth spinal surgery and wonder if you have seen a neurosurgeon. For my multiple myeloma I have also had many other neurosurgeries. All very beneficial. Good luck in your search for help.
Peace, Nancy

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@1nan

@rkbunn I have read some of your posts while on leave from Connect following a sixth spinal surgery and wonder if you have seen a neurosurgeon. For my multiple myeloma I have also had many other neurosurgeries. All very beneficial. Good luck in your search for help.
Peace, Nancy

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6 spinal surgeries! Goodness! I am Glad they have all been beneficial for you. I am having a ESI at L5 today. If no improvement I will likely see a neurosurgeon. Thank you.

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@mikaylar

Hi Jackie! I suffered this monster for years. Sat on a donut for 14-1/2 hours. Until……I started on anti-seizure medicine for an unrelated matter and I got relief immediately. I didn't take the medicine for long. You must tell your doctor.

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What medication was it that you started? Which doctor prescribed it for you?

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@rkbunn

What medication was it that you started? Which doctor prescribed it for you?

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I meant to say 14-1/2 years on a donut. I don't remember the medication but it was off-label for daily persistent headache. Maybe Topamax. Sorry, I don't know.

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@rkbunn

Hello. Which Doctor did you use?

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I was treating with a neurologist at the time I got the anti-seizure meds. Medicine was for an unrelated health issue but it worked for my nerve entrapment. It makes sense cause it is like a spasm in the pelvic area. Ask you doctor.

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Just joined the group this minute. I suffered from this problem since my late teens but it became worse as I got older. I had surgical procedure for nerve entrapment in my ankle but had no idea what this pain was from since it was never the same kind or in the same place – just in any place that was usually covered with underwear. In 2016, after suffering and being unable to sit for more than 15 minutes at a time, a Pain Specialist suggested that it was a GYN problem & suggested a few diagnostic tests. I'm an RN but knew nothing about this so I went online & found a gynecologist who specializes in minimally-invasive gynecology. After listening carefully to my history & nodding without interruption, she attempted to examine me but it was too painful. She scheduled an exam with light sedation & did a Pudendal block test:& Pudendal motor latency test. Once they were positive, she scheduled me for regular blocks & pelvic PT. It's a chronic condition but it is being managed pretty well now. I stopped taking Gabapentin or any other pills in 2016.

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@marjorielyn1

Just joined the group this minute. I suffered from this problem since my late teens but it became worse as I got older. I had surgical procedure for nerve entrapment in my ankle but had no idea what this pain was from since it was never the same kind or in the same place – just in any place that was usually covered with underwear. In 2016, after suffering and being unable to sit for more than 15 minutes at a time, a Pain Specialist suggested that it was a GYN problem & suggested a few diagnostic tests. I'm an RN but knew nothing about this so I went online & found a gynecologist who specializes in minimally-invasive gynecology. After listening carefully to my history & nodding without interruption, she attempted to examine me but it was too painful. She scheduled an exam with light sedation & did a Pudendal block test:& Pudendal motor latency test. Once they were positive, she scheduled me for regular blocks & pelvic PT. It's a chronic condition but it is being managed pretty well now. I stopped taking Gabapentin or any other pills in 2016.

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Hello @marjorielyn1, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Thank you for sharing your experience and what has helped you. It's good to hear that you have it pretty well managed even though it's a chronic condition.

Do you have any other suggestions you can share with members that has helped you?

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