Anyone out there diagnosed with Pudendal Neuralgia?

Posted by LeighO57 @leigho55, Jun 5, 2018

I have not been on connect for quite a while since I have only recently received a diagnosis (one of many probably to come) I am looking for someone/anyone who has the pain from a surgical injury of sorts to this nerve to talk to. Is there anyone out there with Pudendal Neuralgia on connect? Thank you!

Does anyone know how they, (the med world), differentiate between puedenal pain vs interstitial cystitis? I haven’t received either definitive from my clueless mayo EC care. They just keep offering me bladder installations and leave me to finding guidance via google :(. The nurses tell me “they’ve never seen a patient condition like mine at age 40.” Sorry new to Connect and not sure how this works.

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Hello @bladderhelp, welcome to Mayo Clinic Connect. No need to be sorry! Connect is here for all of us patients to ask questions, share our experience and hopefully find treatments that work for us. I'm not familiar with interstitial cystitis (IC) but have read that it is difficult to diagnose. Here is an article that provides a little more information that may give some understanding of the problem.

Wrong Diagnosis – Interstitial Cystitis Association
https://www.ichelp.org/diagnosis-treatment/diagnosis-of-ic/wrong-diagnosis/

Excerpt from the following article – " A number of disease processes – such as recurrent urinary tract infection, urethral diverticulum, endometriosis, and pudendal neuropathy – can mimic the symptoms of IC/BPS. "

The broad picture of interstitial cystitis – Publish date: May 3, 2017 By Kenneth M. Peters, MD
https://www.mdedge.com/obgyn/article/136362/gynecology/broad-picture-interstitial-cystitis

Have you thought about getting a second opinion?

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@dmburns54

Hello,
I crushed the left branch of the Pudendal N. in 1995. It took 3 years for a diagnosis and until July of 2001 before I had Pudendal release surgery that finally gave me some relief. Dr Stanley Antolak, while he was on the Urology staff at the Mayo Clinic at that time was the surgeon. His office is in St. Paul, Minnesota, phone number is 763-229-2266. You will find a compassionate and one of the most knowledgeable physicians in the world about Pudendal Nerve injuries. There are many different treatments used now. Please feel free to contact me here or by private message to discuss the complexities of this terrible problem.
Darrell Burns

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Hi Darrell, I think I am dealing with this can I ask how you were finally diagnosed?

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@gtassithomas

Hi Darrell, I think I am dealing with this can I ask how you were finally diagnosed?

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Hello @gtassithomas
My Pudendal nerve injury happened over a 6 month period in 1995 from the extreme pressure created while using a stationary bicycle. Both the internet and information about the Pudendal nerve was very limited. 2 years later, after many different exams by dozens of doctors that diagnosed me with a neurogenic bladder, but nothing with regards to the cause, I discovered a study guide used by med students at the University of Iowa that listed all the peripheral nerves and how they could be injured. Reading the few words, “can be compressed by cycling”, I immediately knew the when, what and where of my injury. A year later, Gerard Amarenco, a Neurologist in Paris, did the EMG and Motor Latency exams that confirmed the diagnosis. Dr. Amarenco published one of the first journal articles about how the Pudendal nerve could be injured and how devastating this peripheral nerve injury can be. In October of 1997, before the discovery of my injury a Medtronic Intrathecal pain pump was implanted and significantly helped with the neuropathic burning pain. That is until the stitches anchoring the catheter at L-2 tore loose and over the next 6 years developed leaks at the attachment to the pump and 3 other locations, causing Adhesive Arachnoiditis. The benefits of the nerve release surgery in July of 2001 were completely overshadowed by the, at that time, undiagnosed Adhesive Arachnoiditis. It took until August of 2008 when a neuroradiologist read my MRI and diagnosed the Adhesive Arachnoiditis. Please let me know if this helps you. I am willing to do anything I can to assist you by phone if I can figure out how we can share private information using this site.

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Is anyone experiencing chronic pelvic pain? I'm 2 years in and can't get anything to help with breakthrough pain. I take 1200mg of Neurontin three times a day… If makes me stutter and have tremors…. It manages 60% of the pain but the rest is still unbearable. I'm finally scheduled for an MRI on Monday… I'm hoping for some kind of miracle I guess!

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@nickyfriskel

Is anyone experiencing chronic pelvic pain? I'm 2 years in and can't get anything to help with breakthrough pain. I take 1200mg of Neurontin three times a day… If makes me stutter and have tremors…. It manages 60% of the pain but the rest is still unbearable. I'm finally scheduled for an MRI on Monday… I'm hoping for some kind of miracle I guess!

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#nicklefriskey. Praying for you

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@lioness

#nicklefriskey. Praying for you

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Thank you ❤️

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@dmburns54

Hello @gtassithomas
My Pudendal nerve injury happened over a 6 month period in 1995 from the extreme pressure created while using a stationary bicycle. Both the internet and information about the Pudendal nerve was very limited. 2 years later, after many different exams by dozens of doctors that diagnosed me with a neurogenic bladder, but nothing with regards to the cause, I discovered a study guide used by med students at the University of Iowa that listed all the peripheral nerves and how they could be injured. Reading the few words, “can be compressed by cycling”, I immediately knew the when, what and where of my injury. A year later, Gerard Amarenco, a Neurologist in Paris, did the EMG and Motor Latency exams that confirmed the diagnosis. Dr. Amarenco published one of the first journal articles about how the Pudendal nerve could be injured and how devastating this peripheral nerve injury can be. In October of 1997, before the discovery of my injury a Medtronic Intrathecal pain pump was implanted and significantly helped with the neuropathic burning pain. That is until the stitches anchoring the catheter at L-2 tore loose and over the next 6 years developed leaks at the attachment to the pump and 3 other locations, causing Adhesive Arachnoiditis. The benefits of the nerve release surgery in July of 2001 were completely overshadowed by the, at that time, undiagnosed Adhesive Arachnoiditis. It took until August of 2008 when a neuroradiologist read my MRI and diagnosed the Adhesive Arachnoiditis. Please let me know if this helps you. I am willing to do anything I can to assist you by phone if I can figure out how we can share private information using this site.

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Wow!! It sounds like a nightmare! I have my first MRI on Monday and am seeing a pelvic pain specialist who has knowledge of pudendal neuralgia on Wednesday. No one can understand this pain… I'm sure you can relate. I hope you're at least getting some pain relief?

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@nickyfriskel

Wow!! It sounds like a nightmare! I have my first MRI on Monday and am seeing a pelvic pain specialist who has knowledge of pudendal neuralgia on Wednesday. No one can understand this pain… I'm sure you can relate. I hope you're at least getting some pain relief?

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Dr’s have no idea had bad the pain is. No one does unless you have it. Have you had nerve testing done yet? Good luck with your MRI. Do know know what may have started the pain?

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I have had 3 vaginal births…. One forceps and my last one had shoulder distocia…. She literally got stuck because she was so big… They almost broke her clavicals to get her out! Then I had a vaginal hysterectomy… Then a 6 hour pelvic organ repair… Then a bladder mesh… So take your pick I guess lol all of these things can cause pudendal neuralgia…. I can't even pin point the offset… It seemed to get worse over the years until now It's every day This chronic pain really wears you down… I have clinical depression but this has certainly made things much worse… Somedays I just don't want to wake up… Going to work and looking after people can be so hard…. When all I can think about is my Crotch

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@nickyfriskel

I have had 3 vaginal births…. One forceps and my last one had shoulder distocia…. She literally got stuck because she was so big… They almost broke her clavicals to get her out! Then I had a vaginal hysterectomy… Then a 6 hour pelvic organ repair… Then a bladder mesh… So take your pick I guess lol all of these things can cause pudendal neuralgia…. I can't even pin point the offset… It seemed to get worse over the years until now It's every day This chronic pain really wears you down… I have clinical depression but this has certainly made things much worse… Somedays I just don't want to wake up… Going to work and looking after people can be so hard…. When all I can think about is my Crotch

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@nickyfriskel Ouch that has to hurt . I had a forcep delivery but have gotten over it long ago. Have you ever looked at Boswellia Sterate ? for pain Its Frankersense another name. Maybe it would help you

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I’ll look into it thank you!

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