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Anyone out there diagnosed with Pudendal Neuralgia?

Chronic Pain | Last Active: Oct 14 2:50pm | Replies (200)

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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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Replies to "Hello @gtassithomas My Pudendal nerve injury happened over a 6 month period in 1995 from the..."

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?