By Stephanie Prendergast
I treated my first patient with Pudendal Neuralgia in 2002. As a young, excitable pelvic floor physical therapist, I was on a mission to help people suffering from pelvic pain and thought it would be just like what they said in PT school: stretch, strengthen, achieve goals, discharge. So when my patient began treatment for PN, I was already anticipating the nice thank-you note I’d soon receive. However, at that time I had no idea how much pain and suffering I would witness in the coming years, how frustrated I would become with the medical community, the healthcare systems in the US and abroad, and with the overall lack of guidance when trying to treat a syndrome that prominent medical institutions did not believe was even real. For the record, every peripheral nerve in the body is vulnerable to ‘injury’ and therefore is capable of becoming a ‘Neuralgia’. Additionally, any person with PN has likely been told at least once that Pudendal Neuralgia is not a ‘thing’, amongst other absurd and technically inaccurate statements.
This Friday, Drs. Mark Conway (Gyn, pelvic pain specialist, and PN surgeon in New Hampshire) and Sheldon Jordan (Pain management and pelvic pain specialist in Los Angeles) and myself are presenting at the International Pelvic Pain Society’s annual scientific meeting the topic “Interdisciplinary Management of Pelvic Pain” at the International Pelvic Pain Society’s annual scientific meeting. I subtitled my portion of the talk “Pudendal Neuralgia: Then and Now”. I’ll explain why.
The diagnosis and treatment of the disorder has changed tremendously over the years. Many people in the general medical community and pelvic pain specialists have expressed desire to better understand PN. Providers are frustrated they have not been able to help their patients in a manner or timeframe that is understandably expected. Drs. Conway, Jordan, and all of the therapists at PHRC treat a high volume of patients with pelvic pain specifically, PN. We are honored that we were invited to speak, and will be consolidating the evidence and our clinical knowledge on PN.
PHRC is dedicating this week and next week’s blog to PN. This week, we will take a look at our previous blog posts on the topic, putting them in one accessible location. Next week, we will expand on some of the topics previously covered. Spoiler alert: we’re discussing sensitive nervous systems, changing your opinion about pain, how to think of it as a treatable diagnosis, not just a symptom of another problem. Additionally, on November 5th, Drs. Conway, Jordan and I will be on The Pelvic Messenger radio blog to answer your questions! So here we go.
Our first blog on PN, ” How do I know if I have PN or PNE?” was posted on November 14, 2013. The post had to be broken into several parts because of how much needed to be said on this topic. It was then that we realized how important it would be to shed light on this topic. Additionally at the time of the first post, the PN vs PNE question was front and center our minds as well as in the minds of our patients who had any sort of pain with sitting. You can read our first PN blog HERE.
In the early years of the PN diagnosis, physical therapy was not considered the first-line of treatment for PN like it is now. In fact, it was barely considered AT ALL. Understandably much has changed since then, so we decided to write a post about how pelvic floor therapists today approach PN and PNE treatment, while emphasizing the protocol that our PHRC therapists follow. We named the blog “The Role of PT in Treating PN” and truth be told, it took off (more about that later, but spoiler alert: it inspired a portion of our book Pelvic Pain Explained!). You can read that blog HERE.
As we continued demystifying pudendal neuralgia for our readers, we realized that there was vaulable information to be found in the stories of those treating PN caused by PNE. So, we asked Drs. Mark Conway and Hibner to chime in for the segment “Your PNE Questions Answered”. Again, we were overwhelmed by the response we received from our readers and the medical community. The internet (in our small pelvic PT world mind you) EXPLODED with hundreds of questions, comments, and stories from readers expressing their gratitude and for some, their frustrations, about their experience with PN treatment. So, we wrote a part two.
Just when I was beginning to be somewhat satisfied with the reliable information we’d made available, PN was “covered” by US News and World Report. In my opinion, the article created a dismal landscape and seemed to undermine all the hard work and efforts of those in the pelvic pain community who strived to paint an accurate picture of PN. The writers were well-intentioned I am sure, however the message missed the bigger picture, prompting next blog and the genesis of the upcoming lecture: “PN Wrecking Ball: Why Media’s Words Matter”, which you can read HERE.
As I look back on my own posts, I realize that even though PHRC shared so much information with our readers, there is still room for improvement. As you can see, the material for understanding PN is lengthy, and we’re not done yet! Stay tuned for a future blog that will talk about an often missed point: how to troubleshoot and resolve treatment plan ‘hiccups’. To be clear, this is the norm, not the exception. A patient will either not tolerate, or not respond to at least one form of treatment, but, these challenges CAN be resolved.
All my best,
Stephanie Prendergast, MPT
Stephanie grew up in South Jersey, and currently sees patients in our Los Angeles office. She received her bachelor’s degree in exercise physiology from Rutgers University, and her master’s in physical therapy at the Medical College of Pennsylvania and Hahnemann University in Philadelphia. For balance, Steph turns to yoga, music, and her calm and loving King Charles Cavalier Spaniel, Abbie (Abbie is a daily fixture at PHRC Los Angeles). For adventure, she gets her fix from scuba diving and global travel.