A Second Look at Pudendal Neuralgia.

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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 realFor 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

BioPictures_0000_Layer 12Stephanie 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.


30 thoughts on “A Second Look at Pudendal Neuralgia.

  1. Thank you Stephanie for your tireless work on behalf of your patients and the rest of us trying to manage our Prudential Neuralgia conditions.

    I love your focus here on the evolution of what you’re teaching approach has been depending on what is needed.

    May every word you speak at this next conference be blessed by all of our gratitude.

  2. I have pudendal nerve damage from a surgery in 2009 to remove my ovaries and some pelvic adhesions. I did have pelvic pt for about a year with good results, but still suffer chronic pain and take Lyrica. Now, in the last few months I have begun to have a terrible burning pain in my right lower pelvic area. US shows some sort of calcified mass there where the ovary was previously taken out ( which also had a calcified lesion on it). My uterus was left intact and has 5mm thickness which concerns the gyn doc. I am in terrible pain….what do I do next ? Is this something that would benefit from pelvic pt again ?

    • Hello Mrs M,

      We recommend that you consult with a local pelvic floor therapist. He or she will be able to give you a second opinion, and determine which treatment options would be best for you. I may be able to recommend a specialist. Where are you located?

      Kinda Regards,

      Stephanie

  3. Stephanie, I am so so proud of you, Your work is so hiccup so important!! Excited about the book, and this weekend as well! Wish you could rest, sorry! I miss you and love you. Susan

  4. Thank you so much for taking an interest in this topic and patient population! As someone who has overcome PN twice, (yes, twice!), I can say that I would have never gotten better had it not been for you and other therapists putting the proper information “out there” on the internet for me to find.

  5. Stephanie, I had two J&J Ethicon Procare pelvic mesh devices implanted in July 2010 for a rectocele and cystocele due to pelvic prolapse and mild urinary incontenence from 5 full term pregnancies and two miscarriages.

    The mesh is now protruding through my vagina, and I have developed severe sciatic pain and terrible skin problems on both lower legs, arms, and upper back and neck.

    Do you know of any such problems or treatments? I have put off removal of the mesh because I fear multiple surgeries.

    I would appreciate any information you might provide.

    Sincerely,
    Susan Gaynor

  6. I had vaginal mesh implanted twice for a total of 5 mesh slings, 2 surgeries to implant. The first 3 did not hold so the Dr. Put in two more over the previous 3…. Then after PT, many pelvic floors injections, and multiple surgeries to remove the mesh,then saturation of the pudendal nerve with 2 different anesthesias’. I am left with uncontrollable pain not only in the groin and buttocks area, but the pain runs down both legs and hips. I now have numbness in parts of my legs and both feet. As well as my groin. It has now been 7 years, and I am told that this is now my new normal. I juice daily to replace nutrients, because pain makes you not want to eat. I take turmeric for inflammation and narcotics to help the spams in my bladder and pelvic floor, but nothing takes the pain away. Any comments may help…..

    • Hello Elizabeth,

      I am sorry to hear about your situation. I may be able to offer you a therapist recommendation. Where are you located?

      Best,

      Stephanie

    • Elizabeth, I mentioned this in a comment above, but will also post this reply to your comment to make sure you see it. I admin a mesh-injury support group on Facebook called Mesh Problems. We have 1,100+ members who have been injured by mesh implants very much like the issues you’re describing. I personally have had 7 surgeries over the past 5 years since my mesh implant for prolapse, and am still in quite a bit of pelvic pain myself. Pelvic physical therapy helped me a great deal after my mesh was fully removed – my pelvic muscles were in a tight spasm, and it was adding to the nerve pain to the point it was unbearable. Once the pelvic therapist was able to get all my muscles relaxed again, the pain lessened a great deal. Please feel free to join our Mesh Problems group if you would like – there is lots of great information in the group’s files, plus wonderful support from the members. Hope to see you there. Hang in there, there is hope. 🙂 https://www.facebook.com/groups/meshproblems/

  7. Your dedication to this condition is truly commendable and i wish i lived closer to one of your offices because i’d be there in a heartbeat.
    Is there a therapist you can recommend in the Buffalo,NY area? i’ve been in agony the last 4 yrs and everyone i’ve seen here looks at me like i’m crazy.
    Thank You,
    Chris

    • Hello Chris,

      I’m sorry, but we do not have a therapist recommendation in Buffalo. Are you able to travel elsewhere?

      All my best,

      Stephanie

  8. We live near Toledo, Ohio and I have been suffering from PN/PNE for the last 15 years. I have been to several PTs over the years with no success. Do you know of any Pts in my area who you would recommend.
    I read your latest post where you and Drs Conway and Jordan are going to be on The Pelvic Messenger radio blog 11/5.
    What do I have to do to listen to it?

    Thank you

    • Hello Valerie,

      We are not familiar with any therapists in Atlanta, but can recommend other therapists in the area. Here is their information:

      Howell Lone PT Auburn GA (770) 995-5242 lone_howell@msn.com Physiotherapy Associates Lawrenceville
      Hunt Jenny PT Alphretta GA 678-819-8720 provenance.rehab@gmail.com Provenance Rehabilitation of the Greater Atlanta Area

      Best,

      Stephanie

  9. Do you have a recommendation for a therapist near Pittsburgh, PA? My father in law was recently successfully treated for prostate cancer without surgery, but is getting up to urinate every 90 minutes at night, and can’t stand to urinate as he developed fecal incontinence when urinating a year ago. The fecal issue is what drove him to the doctor initially. The prostate cancer was very low grade and only radiation was used in treatment. I’m not sure if drugs were used, too, but no surgery. I’ve had severe PN and my treatment takes place in Texas so I have no idea who to send him to in PA. Any help would be appreciated.

    • Hello Ashley,

      Christine Wood, PT is located in Pittsburgh, PA. Here is her information:

      (412) 967-9229
      Fox Chapel Physical Therapy

      Best,

      Stephanie

  10. Can you recommend a Dr. For diagnosis in CA. I live in Fresno, Central Valley and have not found anyone near by. I have a local PT, but we were thinking that I should try to get a firm diagnosis. I do have symptoms of pudendal nerve issues and inability to sit or have intercourse without pain. I have been seen at UCSF pain mgmt with some success with pudendal nerve blocks/abrasions, but that has not helped with the sitting. Overall my pain has decreased a great deal, but I would like to be able to sit again in a regular chair. San Francisco is hard for me, LA is further, but may be easier to navigate and I have relatives in the general area. I just don’t know what to do next. But I would be willing to travel if I know that there is a good MD out there to help. Preferably one that takes insurance.

  11. I had pudendal nerve blocks with Dr. Weiss in SF but they did not help. He still thinks I have pudendal neurlgia and my symptoms fit the bill. I also have bad disc degeneration in L4/L5 with herniated discs and stenosis that may require surgery decompression and fusion. But my symptoms fit PN perfectly….Should I see Dr. Beco and go to belgium? Someone on this said he had a great surgery with him! Most of the pelvic floor PT has not helped much, but willing to try again if you now the best in the East Bay….been suffering too long…..AJ

  12. I had pudendal nerve blocks with Dr. Weiss in SF but they did not help. He still thinks I have pudendal neurlgia and my symptoms fit the bill. I also have bad disc degeneration in L4/L5 with herniated discs and stenosis that may require surgery decompression and fusion. But my symptoms fit PN perfectly….Should I see Dr. Beco and go to belgium? Someone on this said he had a great surgery with him! Most of the pelvic floor PT has not helped much, but willing to try again if you now the best in the East Bay….been suffering too long…..AJ

    • My sacral fracture and spinal cord compression from L2-3 stenosis were mud-diagnosed as PNE. My rehab fix did MRIs and sent me to my spine surgeon who did laminotomy making more room. I had instant relief.

  13. Hi Stephanie,

    I left a lengthy description on your forum a few months ago but it didn’t make it through admin. Perhaps it was too long winded or confusing. I have since received a diagnosis of pudendal nerve ‘damage’. It came about through cycling which I gave up 9 months ago. The pain in the pelvis is still present albeit things have improved slightly in the last 6 months. My libido and ED are still apparent though.

    My Doctor has referred me to a pain management clinic in Manchester, UK but has said he has found nobody in the UK that treats PNE. Do you know of any Physical Therapists in the UK that can help me?

    Thank you for this resource and all of your great work. I would like to share my won story with others at some point.

    Many thanks

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