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.

@1mepnurse

Pudendal nerve issues…vag area
' on fire', rectal pain to sit, rectum feels full with true misery, difficult having BM' s. Drs know little about it, to help with any solution.
Pelvic floor therapy recommended.

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Yea I don't have those problems just hands, arms, feet, and legs go numb.

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@jesfactsmon

@lorettat
Even though I personally have no experience of addiction in my family or my life, you have my sincerest sympathy for what you face . The fact that you grew up among addicts coupled with the fact that you may have genetically inherited addictive tendencies yourself means that when you were developing as a youth you were likely imprinted for life with the addictions you were witness to during that time. You grew up with a no win situation. You should feel no blame for any of this, there is no fault here. It's just a very sad set of circumstances and for you to be struggling with this your whole life and be as lucid-sounding as you are is a testament to your character. Best, Hank

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Thank you Hank for your epathedict words of wisdom. I don't know about the imprinting as most of my family was alcoholics but I am sure it had its effects on me even if I don't remember it I know I have blocked out parts of my childhood maybe that's when the imprinting took place. Sometimes I wish I knew what I was blocking out and other times I'm glad I don't remember. But as I get older I am leaning more to wanting to know maybe then my life would make more sense to me. Why I am the way I am.

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@lorettat

Thank you Hank for your epathedict words of wisdom. I don't know about the imprinting as most of my family was alcoholics but I am sure it had its effects on me even if I don't remember it I know I have blocked out parts of my childhood maybe that's when the imprinting took place. Sometimes I wish I knew what I was blocking out and other times I'm glad I don't remember. But as I get older I am leaning more to wanting to know maybe then my life would make more sense to me. Why I am the way I am.

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@lorettat
There is a great example of a man (called Mr. L in the book) who was able to explore his childhood traumas using neuroplasticity. It is in the book The Brain that Changes Itself in chapter 9 (covered in about 30 pages). I would recommend this for you to see how a person can manage to get to the root of their life issues caused in childhood. I see the book is available on Amazon for $6 used. If you read this you may understand better what I meant by "imprinting". Just in case you are interested. Best, Hank

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@ahayes

With nerve entrapment, what I am experiencing is that for true nerve compression or entrapment, the only permanent relief is surgical release/decompression of the nerve.

I had a terrible tibial nerve entrapment that caused me so much pain I wanted to die. When I had surgery to release that nerve in October, it felt better quickly. Now, I need to go back to the surgeon and have more nerves decompressed to fix my other "pain spots".

I got this problem from a surgery, too. It took 4 years, failures, trying every conservative option possible, in order to find the right doctors to fix my problem. Doctors who did believe me. And to get to a point where I believed what I was told, that surgery would help. To rule out all other options.

There are doctors who specialize in peripheral nerve release surgery and others who dont sub specialize but at very good. I have seen several sub specialists but ultimately went with a plastic reconstructive surgeon closer to me for many reasons.

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I have been dealing with pudendal nerve entrapment since 2008, I haven’t found any doctors that actually help with this, I have so many injections, internal and external physical therapy. Usually what I get is that it’s all in my head. I did get a Neurostimulator, it helps with my other problems, but not the pudendal issue. By the way I was a pedestrian struck by a vehicle. I went to drs in three different states no help, could you give names of drs that have helped you?

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@mad

I have been dealing with pudendal nerve entrapment since 2008, I haven’t found any doctors that actually help with this, I have so many injections, internal and external physical therapy. Usually what I get is that it’s all in my head. I did get a Neurostimulator, it helps with my other problems, but not the pudendal issue. By the way I was a pedestrian struck by a vehicle. I went to drs in three different states no help, could you give names of drs that have helped you?

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Hi @mad, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. @jenniferhunter shared a post earlier in this discussion that talks about Myofascial Release Therapy (MFR) that is known to help PNE – https://connect.mayoclinic.org/comment/218802/

The Pudendal HOPE (Health Organization for Pudendal Education) website has a list of doctors you might find helpful here – https://www.pudendalhope.info/node/54

You mentioned that you have a Neurostimulator that helps with your other problems but not the pudendal issue. Have you found anything that helps a little to provide some relief?

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@johnbishop

Hi @mad, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. @jenniferhunter shared a post earlier in this discussion that talks about Myofascial Release Therapy (MFR) that is known to help PNE – https://connect.mayoclinic.org/comment/218802/

The Pudendal HOPE (Health Organization for Pudendal Education) website has a list of doctors you might find helpful here – https://www.pudendalhope.info/node/54

You mentioned that you have a Neurostimulator that helps with your other problems but not the pudendal issue. Have you found anything that helps a little to provide some relief?

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Really the only thing that helped me was to learn to be modest and say I can’t do that. I have gone to Myofascial Physical therapist in Arkansas and Texas that’s where I had the internal physical therapy and external therapy. She did help realize there wasn’t just that injury. She helped to get to Philadelphia because I had athletic publigia/ my abdominal muscles were torn off the pubic bone and the Doctor there helped to get surgery for the hip problems as well as having my aductor muscle released because it had drawn up so bad I couldn’t put my foot on the ground. And with all that the pudendal nerve gave me pain like I have never experienced before. I was always a very active individual, learning that that part of my life was over and quit trying to live as active as I was / took six years for me . I’m stubborn🤪I still take pains meds just not fentanyl. I was in hydraulic wheelchair service I wouldn’t have to sit, now I can walk short distances, I have a little scooter that I use occasionally. And I have family that has been very patient ,with me thru this whole journey. I just happened across this thread. I have pretty much resigned myself to having to deal with this problem from now and have gone Ben up getting help with it. Sorry so long winded but you really can’t describe this to anyone who hadn’t experienced it, thanks

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@skiak22

Hi all. I'm a new member and I have read all the posts concerning the pelvic pain. Mine started 9 years ago from no apparent reasons and I've been through all the procedures that everyone has described. I've been standing up for these 9 years trying to find a specialist that knows how to deal with this problem. Sitting is very painful but one thing that no one has mentioned in their posts is laying down is just as painful if not worse. Anyone out there that has both problems? The only way I can get any sleep is by taking prescribed medication. Otherwise, I'm awake all night long and of course the pain is there all night long.

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When I have what I’m calling a flare up I can’t lay down either, I have found that a good ice pack . I have one that will last for hours,

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@melissahebert

new member here, i have been suffering with "for lack of better words" butt pain since 2013. It is mainly on the sit bones. My urologist, who treats me for IC, told me this was caused from the pudendal nerve. He was actually able to do an internal exam and press on the location, which cause the exact pain that if feel. Unfortunately, there is no one in my area who specializes in the pudendal nerve. So basically I don't know if it is entrapment or something else. I do know the pain has intensified and now includes spasms in the anus area.

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I don’t know where you are from , I have had the same problem. I am going to a new pain doctor, he has no idea either,

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@dmburns54

Hi @lorid,
I injured my Pudendal Nerve in 1995 and had surgery in 2001 at the Mayo
Cinic that was extremely effective. I don’t believe the Mayo Clinic treats
this condition currently. Please tell me where you are located and I will
try to help you find a doctor that can help you.
Take care,
Darrell Burns

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I would also like to know , I have tried Arkansas, and Texas so far

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@JustinMcClanahan

@ahayes, how affective is the nerve stimulator for you? Members on Connect have expressed a wide array of results, but some have found stimulators to be very helpful.

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I have a Neurostimulator, to me it distracts your mind from the pain.

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@mad

I have a Neurostimulator, to me it distracts your mind from the pain.

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I will not get rid of the pain but will make it seem less. But I still couldn’t get back to the life I had before my accident.

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@mad

I have been dealing with pudendal nerve entrapment since 2008, I haven’t found any doctors that actually help with this, I have so many injections, internal and external physical therapy. Usually what I get is that it’s all in my head. I did get a Neurostimulator, it helps with my other problems, but not the pudendal issue. By the way I was a pedestrian struck by a vehicle. I went to drs in three different states no help, could you give names of drs that have helped you?

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My experience has been if a vain doctor does not know the answer then he or she says that it is all in your head. Sorry but I do not have the name of someone to help you.

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