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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.

cake | @cake | Mar 8, 2020
In reply to @qball2019 "@cake I am in Lakewood, WI which is about 1.5 hours straight north of Green Bay...." + (show)
@qball2019

@cake
I am in Lakewood, WI which is about 1.5 hours straight north of Green Bay. A pain management doctor should be able to help with the PN pain. You may also want to add an integrative pain specialist to your team of providers and ask that they work together. This is what I've done and it has helped tremendously. Good luck to you, take care!

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Thank you, this is all so confusing to me.

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cake | @cake | Mar 8, 2020
In reply to @qball2019 "@cake I am in Lakewood, WI which is about 1.5 hours straight north of Green Bay...." + (show)
@qball2019

@cake
I am in Lakewood, WI which is about 1.5 hours straight north of Green Bay. A pain management doctor should be able to help with the PN pain. You may also want to add an integrative pain specialist to your team of providers and ask that they work together. This is what I've done and it has helped tremendously. Good luck to you, take care!

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I don't have the vagina, urethra pain. Just sit bone pain, butt crack pain, and bottom of sacrum and buttocks pain. Not sure what I have.

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1 reply
qball2019 | @qball2019 | Mar 8, 2020

@cake
Your pain sounds awfully familiar. Do you have a copy of all your MRIs, CT scans, etc.? If so, take a look to see if they mention anything about Tarlov cysts. If you do, chances are that when you mention it to your doctors they will tell you they don't cause any symptoms. Actually they do and if you have them you will need to seek a doctor that is willing to acknowledge the cysts, learn more about them, and work with you. Just an idea for you.

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dmburns54 | @dmburns54 | Mar 8, 2020
In reply to @cake "Hi Darrell, I'm near Milwaukee, Wi and may have PN. Can you help?" + (show)
@cake

Hi Darrell, I'm near Milwaukee, Wi and may have PN. Can you help?

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Hello @lorid I am happy to answer your questions and do whatever I can to help you to learn more about the attack from the Pudendal nerve you are suffering from. If we can do a private message and or speak with each other by phone it would facilitate a better way for me to answer your questions. Darrell

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2 replies
cake | @cake | Mar 8, 2020
In reply to @dmburns54 "Hello @lorid I am happy to answer your questions and do whatever I can to help..." + (show)
@dmburns54

Hello @lorid I am happy to answer your questions and do whatever I can to help you to learn more about the attack from the Pudendal nerve you are suffering from. If we can do a private message and or speak with each other by phone it would facilitate a better way for me to answer your questions. Darrell

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That would be great! If you could give me your cell# I will text you. @cake

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acid2come | @acid2come | Mar 9, 2020
In reply to @qball2019 "@stephpez I went to see Dr. Feigenbaum in Dallas, TX. I am currently fighting with my..." + (show)
@qball2019

@stephpez
I went to see Dr. Feigenbaum in Dallas, TX. I am currently fighting with my insurance co. to approve the surgery. There is another in CA and his name is Dr. Shrot. You can find all of their info. and a ton more very helpful info. at http://www.tarlovcystfoundation.com Also, there is a Facebook group called Tarlov Cyst Society where I see quite a few people talk about their experiences with the 2 doctors I just mentioned. Since arachnoiditis goes hand in hand with Tarlov Cysts you will find extremely helpful info at http://www.arachnoiditishope.com and there is a Facebook group called Arachnoiditis Society For Awareness And Prevention. Another thing you can do is go to http://www.frankfeigenbaum.com There is a section on there that tells you step by step what to expect on surgery day and recovery. If there is any other info. I can help you out with please let me know. Take care!

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Thank you,for the help.. I’m so scared because it’s in my nose lungs and throat thank you again

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cake | @cake | Mar 9, 2020
In reply to @melissahebert "new member here, i have been suffering with "for lack of better words" butt pain since..." + (show)
@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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Melissa, where are you located? Mine started 9 months ago at the sit bone and now has progressed to the tailbone. Not sure what to do about it.

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1 reply
cake | @cake | Mar 9, 2020
In reply to @betty1954 "I have lived with this pain continual for overe 10 years also. I also tried the..." + (show)
@betty1954

I have lived with this pain continual for overe 10 years also. I also tried the spinal stimulator and had problems the whole two years I had it in. A neuro surgeon then did back surgery and put in a 10 inch bar due to disc deteriation in my back. I started seeing a pain specialist about 18 months ago. We have tried injections, ablations and had little success. I have now started on a pain patch that so far has relived at least 95% of my pain. I feel I can now live a fairly normal life if it continues to work as it is now. I am so thankful for my pain specialist not giving up on me.

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What kind of patch and where do you put it?

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cake | @cake | Mar 10, 2020
In reply to @dmburns54 "Hello @lorid I am happy to answer your questions and do whatever I can to help..." + (show)
@dmburns54

Hello @lorid I am happy to answer your questions and do whatever I can to help you to learn more about the attack from the Pudendal nerve you are suffering from. If we can do a private message and or speak with each other by phone it would facilitate a better way for me to answer your questions. Darrell

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Does anyone know where to get a CT guided pudendal nerve block in WI? Preferably in the Milwaukee area?

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qball2019 | @qball2019 | Mar 10, 2020

@cake

Pain management doctors normally do all the nerve blocks and other injections. I would recommend Advanced Pain Management

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