Anyone out there diagnosed with Pudendal Neuralgia?

I'm not a Health expert but not understanding his pain since you said he was paralyzed. Seems like the thalamus part of his brain might have been triggering pain that may or may not of been there.

Hello Darrell, You were so nice to reply back in June and I have not been back on to respond. I am not a surgical candidate for any type of help to ease any of my pain I have been going through almost three years now. Yes, I am angry. I could of possibly been helped if I had been treated and listened to seriously sooner. NO ONE can tell you how you feel or what you are going through unless they are experiencing it themselves. NO ONE. Not even a Doctor. You have to be living this. It sounds like you were helped and that is great news. That is wonderful news. My nerve/nerves are in a different outcome than yours but I very much appreciate the name of Dr. Antolak. Medication does not even help with the nerve pain anymore it is constant. So bad. No one has any clue. Being lead around like a pony.

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.

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?

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

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.

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!

#nicklefriskey. Praying for you

Thank you ❤️

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?