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.

@qball2019

@donfeld
Since you have arachnoiditis I strongly urge you to do some reading at http://www.arachnoiditishope.com and http://www.intractablepain.com There is a self help protocol that WILL help with your pain and overall health. You will also find a bunch of into. for you to print out and take to your doctor. Best wishes to you!

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I feel the need to step up in accordance with your response to the opioid conflict and addicts. I am an addict and I also fight to get the medical treatment I need. Not all addicts are responsible for people in need not being able to get what they need. I face the same dalima you do needing pain meds and not being taken seriously because of my addiction and the belief that I am just after that hi. I don't like pain meds I don't drink or smoke weed. I did not ask to be an addict I assure you and I battle it everyday just as I battle my dissection, and every other thing that has been pooped on my head in the past 50 years. Yes there are those out there that are guilty of what you say but not all of us are guilty. Trust me I've paid a dear price for my addiction in more ways then you could ever imagine. Most addicts are just like me. We are not proud of being addicts but we deserve to be proud of who we are. We get sick just like everyone else. We need meds just like everyone else but you think it's hard for you to get pain meds you should be me, the struggle is ten times harder. I understand your frustrations and emphasize with you but please don't think all addicts have caused this situation.

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@lorettat

I feel the need to step up in accordance with your response to the opioid conflict and addicts. I am an addict and I also fight to get the medical treatment I need. Not all addicts are responsible for people in need not being able to get what they need. I face the same dalima you do needing pain meds and not being taken seriously because of my addiction and the belief that I am just after that hi. I don't like pain meds I don't drink or smoke weed. I did not ask to be an addict I assure you and I battle it everyday just as I battle my dissection, and every other thing that has been pooped on my head in the past 50 years. Yes there are those out there that are guilty of what you say but not all of us are guilty. Trust me I've paid a dear price for my addiction in more ways then you could ever imagine. Most addicts are just like me. We are not proud of being addicts but we deserve to be proud of who we are. We get sick just like everyone else. We need meds just like everyone else but you think it's hard for you to get pain meds you should be me, the struggle is ten times harder. I understand your frustrations and emphasize with you but please don't think all addicts have caused this situation.

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@lorettat, first of all, thank you for stepping up and taking part in this discussion. I bet that wasn't easy to do.

People who struggle with addiction or substance abuse should not be demonized. In our society there is an unconscious belief that people who live with addiction have a moral or character flaw. This is simply untrue and constitutes discrimination. People dealing with addiction have a chronic disease just like diabetes or heart disease.

- Addiction: Character Defect or Chronic Disease? https://www.asam.org/Quality-Science/publications/magazine/read/article/2014/03/13/addiction-character-defect-or-chronic-disease

The more recent government movement to tighten restrictions on narcotic pain medications is a complicated issue. The government’s stance is not based on science and medical recommendations but is a drug enforcement and punitive approach. There are many causalities in this short sighted perspective. The discussions about pain management in the forum demonstrate that. I'm thankful that members here are willing to talk openly and share their experiences.

@lorettat, what tips can you share about talking with your doctor about pain management as a recovering addict? What helps them see your needs?

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Honestly I have to get down right hateful almost demanding with them. I am a meth addict and I am stereotyped for that alone. I am a ,or was ,a functioning addict. I worked hard, I didn't go around stealing to support my habit, and I don't go to walmarts at 4 a.m. and turn the carts upside down and take the wheels off of them for no apparent reason; I only take the wheels off of the ones that had an apparent reason, lol! I am educated, worked in a professional stage paid my bills and even went to church on Sunday. But no matter what I did or didn't do when I get sick and hurt I have to go phyco on doctors before they figure out I'm serious. I guess I'm just too passive / aggressive and I feel like I have a big sign pinned to my forehead that says I'm a junkie... Watch out, or something. So I'm probably not the person to ask that question of. I wish I could help but I just usually do what the doctors tell me to until I blow up. No good life handling skills, but for me it is usually affective. Maybe it's because I do try to try everything they recommend first and they see that,but sometimes I just ain't feeling very cooperative and I hurt and I want it to stop NOW!!!! Anyways, maybe just to be patient with your doctors we have enough on our plates we don't need to and they don't want to add addiction to our list. I promise when I was in second grade and my teacher asked what I wanted to be when I grew up my answer was not a junkie. I was born with the desease. My dad was the town drunk and 90% of my family on both side were alcoholics as well. I got up on my high and mighty horse and told the world I wasn't going to be like my dad, and I'm not a drunk don't even drink but God showed me to climb off that horse and have some empathy for others you never know what you might become. Never say never and always say thank you

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What are the symptoms. I know I have neurropothy not sure which kind unless it's part of my dissection and blood clots.

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@lorettat

What are the symptoms. I know I have neurropothy not sure which kind unless it's part of my dissection and blood clots.

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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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@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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@1mepnurse I sent you a private message. You can try some of the recommened supplements and exercises.

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@lorettat

Honestly I have to get down right hateful almost demanding with them. I am a meth addict and I am stereotyped for that alone. I am a ,or was ,a functioning addict. I worked hard, I didn't go around stealing to support my habit, and I don't go to walmarts at 4 a.m. and turn the carts upside down and take the wheels off of them for no apparent reason; I only take the wheels off of the ones that had an apparent reason, lol! I am educated, worked in a professional stage paid my bills and even went to church on Sunday. But no matter what I did or didn't do when I get sick and hurt I have to go phyco on doctors before they figure out I'm serious. I guess I'm just too passive / aggressive and I feel like I have a big sign pinned to my forehead that says I'm a junkie... Watch out, or something. So I'm probably not the person to ask that question of. I wish I could help but I just usually do what the doctors tell me to until I blow up. No good life handling skills, but for me it is usually affective. Maybe it's because I do try to try everything they recommend first and they see that,but sometimes I just ain't feeling very cooperative and I hurt and I want it to stop NOW!!!! Anyways, maybe just to be patient with your doctors we have enough on our plates we don't need to and they don't want to add addiction to our list. I promise when I was in second grade and my teacher asked what I wanted to be when I grew up my answer was not a junkie. I was born with the desease. My dad was the town drunk and 90% of my family on both side were alcoholics as well. I got up on my high and mighty horse and told the world I wasn't going to be like my dad, and I'm not a drunk don't even drink but God showed me to climb off that horse and have some empathy for others you never know what you might become. Never say never and always say thank you

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@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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@doingbetter

I was positively diagnosed with PNE by Doctor Jordan in Santa Monica, CA, with a proprietary procedure in 2004; it was confirmed by specialists in Houston Texas in 2005. I agree, though, that pelvic floor disorders are notoriously complex; PNE did not explain all my symptoms, just most of them. I got PN bilateral nerve release surgery in mid-2005, with initial improvements, but within 6 months was doing poorly again. Then I changed my entire work lifestyle and did substantially better over time, eventually becoming nearly completely pain-free by 2010. I relapsed in 2012, but refused to change my life again until late 2013 when a specialist (Dr Weiss, San Francisco, highly recommended if he still practices) told me to take 3 months off work and stop sitting altogether during that time or I'd become a bedridden invalid. Shocked, but obedient, I did that. I returned to work thereafter 20 hours/week. Now in 2018 I can work 36 hours/week, sit up to 2 hours depending upon the surface and what I am doing, drive myself to store, and I'm down to just taking 30 mg Cymbalta a day (I was taking 3200 mg of Neurontin/day back in 2004!). Life is SO much better. Strongly suggest you look up pudendalhope ...excellent resources for PNE sufferer.

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Hello, could you please share who did the nerve release surgery for you? My mother is suffering as we believe to pudendal neuralgia and pelvic floor pain. I appreciate if you could recommend few doctors to me.

Thanks,
Alex

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@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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Have you been to the https://www.pudendalhope.info/ site? There is a wealth of information about pudendal neuralgia entrapment and pudendal neuralgia. This includes info about doctors (unfortunately not many) and pelvic floor physical therapist’s (not many listed here as well) who deal with this condition. I have been maneuvering through here with initial symptoms that may have been caused by bicycling and weight lifting included in my exercise routine trying to get my pre-diabetes numbers down.

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@alexking44

Hello, could you please share who did the nerve release surgery for you? My mother is suffering as we believe to pudendal neuralgia and pelvic floor pain. I appreciate if you could recommend few doctors to me.

Thanks,
Alex

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@alexking44 It sounds like your mother has not found a treatment or relief from her pain. You are desperate to find her solutions.

I saw in a past post that you and your mother lives in Canada, has limited funds, and that she does not have medical insurance (in the U.S. I assume). Is that correct? These appear to be significant barriers. I did find a website that lists a doctor in Canada that performs pudendal nerve entrapment.

- Health Organization for Pudendal Education http://www.pudendalhope.info/node/15

May I ask what her providers have recommended for treatment?

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