Pudendal Neuralgia Media Wrecking Ball: Why words matter

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By Stephanie Prendergast

Most people dealing with the symptoms of Pudendal Neuralgia (PN) will tell you reading about PN, mostly online, can be traumatizing. “Chronic” conditions often translate to gloomy situations for both patients and providers.

In recent years, the knowledge of pain science and PN has advanced tremendously. In the medical community there is overwhelming evidence to support that educating people who are experiencing persistent/chronic pain on the physiology behind these symptoms elicits far better outcomes (less pain). Information about an individual’s symptoms and diagnosis matters, and it influences the way we are able to process what we are feeling in our bodies.

Let’s consider a typical situation of PN:  An otherwise healthy person develops severe perineal burning when sitting. What often happens: people are bounced between physicians and are often told things from ‘it’s all in your head’ to ‘‘you have a chronic condition that no one can treat’. Conversely, let’s now imagine that the same person is told they have a treatable pelvic pain condition by the first provider they see.This person goes home with medication and a referral to a pelvic floor physical therapist.  While their symptoms are uncomfortable, they were told they can and will be treated. The truth is, the impact of these initial encounters will often dictate how a person feels and reacts to navigating this complex terrain.

On May 7th, 2015, US News and World Report published this article on Pudendal Neuralgia. The  information in this article is conveyed in a manner  that may be necessary for media attention however, as a provider, I have a different take on it.  I view this article as  deleterious to people who have yet to be diagnosed, who are on the road to recovery, or who are stuck in their current treatment plan and may need better management. I am here to tell you PN is a treatable condition.

The article begins by describing how a young woman developed PN. As we approach the end of her case study, the article states,

“According to doctors, pudendal neuralgia occurs in both female and male patients, and can stem from multiple causes. However, it’s often mistaken for other conditions, or overlooked due to embarrassment or a lack of awareness. And the worst part? Sometimes it comes and goes in patients, but often lasts for years – or even decades. Receiving an early – and correct – diagnosis and treatment, experts say, is key to finding relief.”

If I recently developed symptoms of PN, and read this paragraph, my brain would lead me right to  crazy town and I would think my life is over. If you are a person feeling symptoms of  PN and you read this, you might think you are doomed to a life with a disorder that is not treatable. Chances are you have already seen a handful of doctors who did not know what was wrong with you, causing further hopelessness and fear. Far too many people have suffered for too long but thankfully, the landscape has changed! When I started in the field 15 years ago, most of the people I treated had lived with symptoms for over five years. Yet in the last year, and within our 5 practices, it is rare to see a person that went undiagnosed for more than a year. Symptoms of PN do not have to last years, and certainly not decades!

The article then goes on to say:

“Although doctors don’t know how often pudendal neuralgia occurs in the greater population, they say it affects women and men with almost equal frequency. It’s also “much more common than people realize,” says Dr. Jerome Weiss, a San Francisco-based urologist and founder of the Pacific Center for Pelvic Pain and Dysfunction. “It’s unrecognized in a large portion of patients. I see it frequently; I probably have 1,000 patients [with the condition]. There are people who are suffering because they have no diagnosis made.” This, he says, is because many doctors aren’t trained on how to diagnose and treat the disorder, or they’re so rushed during appointments, they don’t have time for a thorough screening. Instead, he says, “they blame it on something else – the prostate or the bladder. They don’t think about  the nerve.”

Currently, we know for certain between 1 in 3 to 4 women suffer from pelvic pain at some point in their lives and that it can affect 8 -10 % of men. Pudendal Neuralgia is a pelvic pain symptom and we do not have data on the prevalence for this particular diagnosis. One of the reasons why we do not have information is because we do not have diagnostic tests to confirm the diagnosis (you can read more about this here). This diagnosis overlaps with other pelvic pain conditions, which are also symptoms. Furthermore, despite our best efforts medical providers will have a professional bias and as a result, patients are often confusingly and frustratingly given multiple diagnoses.

For example, take the case of a woman with burning vulvar pain and urgency and frequency symptoms.  If this woman travels to see a ‘PN specialist’, more often than not they will be diagnosed with PN. This same person may see a urologist and get diagnosed with Interstitial Cystitis, and may see a vulvar specialist and get diagnosed with Vulvodynia. As a physical therapist, I will likely find a high-tone pelvic floor pain syndrome. All of these diagnoses may be technically accurate for this woman, but each diagnosis on its own is like a puzzle piece, only giving part of the picture and accordingly, part of the treatment picture. Because most pelvic pain diagnoses are symptom descriptors, they open the door to many different types of treatments depending on where and by whom the person is evaluated. Secondary factors include how conservative or invasive people are willing to be with treatment.

Where things go south is with a definition of chronic symptoms, multiple diagnoses, and a confused patient with pain but without medical guidance to establish a plan. This problem can be easily corrected by working with one medical professional who can act as a ‘case manager’. Primary care physicians, pain management MDs, gynecologists, physical therapists, and urologists are well positioned to use their medical knowledge to help an individual suffering with PN make informed decisions about what is right for their particular case.

The article then claims:

“The most reliable sign that someone has pudendal neuralgia, experts say, is if he or she feels pain while sitting. That person will find relief, however, if he or she stands up, lies down or sits on a toilet seat.”

For the record, people with symptoms of PN do not always get relief with standing or on a toilet seat. Additionally, numerous musculoskeletal and central nervous system impairments other than the PN can cause pain with sitting. In order for it to be PN, the pain must be in the territory of the nerve and the nature of the pain needs to be neuropathic. Many people feel pelvic pain with sitting outside of this territory and it may be achy or sore instead of burning or numb. This is not PN. The Posterior Femoral Cutaneous Nerve is often overlooked, as pointed out here, trigger points in the Obturator Internus muscle can cause sitting pain at the ischial tuberosity, so can vulvar and anal fissures, to name just a few. Successful treatment involves identifying all of the impairments that are collectively causing the symptoms.

The article describes different factors that can contribute to development of PN. This IS important for treatment because there are many different causes and will clue us in to the differential diagnosis, leading to the initiation of an effective treatment plan. Each person with PN symptoms has different contributing factors and different symptom-causing impairments, which is why a ‘one-size-fits-all’ protocol fails. In the past, patients were prescribed  three pudendal nerve blocks and then surgery if the pain persisted. This approach was not successful because multiple impairments coexisting with nerve dysfunction were often left untreated. If you have had a pudendal nerve decompression surgery and still have persisting pain it can be treated, regardless of when the ‘failed treatment’ occurred.

The article then continues with:

“Those who do receive the correct diagnosis have often suffered for about four years and have seen 10 professionals without any diagnosis,” says Dr. Jacques Beco, a Belgium-based obstetrician and gynecologist who treats patients with pudendal neuralgia. “Neurologists and neurosurgeons never make a gynecological examination or a rectal examination,” he says. “And gynecologists, urologists and proctologists treat the organs, but have little knowledge about the nerves and muscles of the area.” Because of this, a correct diagnosis of pudendal neuralgia sometimes requires a task force of urologists, gynecologists, neurologists and pain-management physicians.

The key to making a diagnosis, Beco says, is to take a full medical history, assess the patient’s symptoms and conduct a thorough external and internal physical examination.”

It is true that many medical professionals are unfamiliar with PN. However, The APTA and IPPS have links on their websites to help people find qualified medical  professionals who are familiar with PN and have treated PN patients. Hundreds of skilled professionals are on these lists. In addition to providers with a particular interest in pelvic pain, pain management physicians specialize in pain and therefore can be of great help. Through conversations with my patients I have heard their disappointment regarding appointments with pain management doctors. Their expectations were to go in, see a doctor, and come out with a ‘cure’. Understanding that pain management doctors can only prescribe and manage medications while the underlying causes are getting addressed is key. It is important to remember that pain management specialists are experts at managing pain, regardless of how much they do or do not know about PN.

and then later in the article:

Many patients who experience this type of chronic pain suffer from mental health problems, experts say. “I have worked on the pudendal nerve since 1995,” Beco says. “Since then, three of my patients have killed themselves because of the pain. It’s a very, very bad disease, and many patients are depressed because of it.”

Many people experience emotional consequences of persisting pain. The situation of suicide is extremely sad and unfortunate. Many more patients have survived PN distress and treatment, than have perished due to their emotional and physical distress. PN is no longer a medical mystery. Every day my patients describe the fear, anxiety, and hopelessness that they felt when they first read about their symptoms and connected with other suffering people online, and their statements are the genesis of this blog post. Behavioral health professionals are great resources to help with the emotional consequences of pelvic pain, and have . It is useful to find a provider that specializes in strategies that can help individuals manage their emotions around their symptoms and think about their pain in a way that results in less suffering. In LA, we work with the Pain Psychology Center. Examples of their therapeutic process can be found in the How It Works section of their website.

The article then states:

Pudendal neuralgia is painful, but treatable. After identifying physical problems that might’ve contributed to the nerve damage – say, abnormal body mechanics – and possibly treating them with physical therapy, doctors can try treatments such as muscle relaxers and neuromodulator drugs, as well as manual therapy.

Here is what I felt this statement failed to inform readers:

  1. Physical therapists are neuromuscular experts and therefore well-positioned to treat pelvic pain syndromes after undergoing specialized training.
  2. Most physicians are not trained to treat the pelvic floor muscles with manual therapy.
  3. Physical therapy is considered a first-line, effective treatment for pelvic pain syndromes.
  4. A physical therapist’s opinion. Here is what what PT’s  think about PN management.

As I read this article I imagined a wrecking ball demolishing the progress physical therapists are trying to making in this field. Exacerbated I emailed the article to neuroscientist Lorimer Moseley, co-author of Explain Pain and other great resources on pain physiology. This is what he had to say:

Hi Stephanie –

There are some disturbing things in there for sure. I agree that it is great to see PN getting some attention, but it is a reminder that what we say and how we say it will affect any pain condition. The reality of any pain condition is that pain, and anxiety, fear and expectations, is dependent on more than just information coming from the body. Therefore, we need to be very careful to give people accurate information that does not needlessly ramp up these protective responses.  we need to take care in ordering tests – are the tests sensitive AND specific? that is, how common is it to have positive tests in healthy participants. if it is common, then tests and the medical terms we give to describe them, can do more harm than good, a point captured in the Choosing Wisely campaigns in US, Canada and Australia.”

I completely agree. To the individuals who are suffering with pelvic pain, please take the time to learn about pain physiology, stay strong, and remember you can and WILL get better.

All my best,

Stephanie Prendergast, MPT

stephanie

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.

 


28 thoughts on “Pudendal Neuralgia Media Wrecking Ball: Why words matter

  1. Hi I was just recently diagnosed with PNE. All of sudden it came on one day and for 10 months I’ve been put off by many doctors but yesterday I found the ONLY doctor in Idaho who trained under the best in the world for PN and he’s 5 minutes away from house! I could not believe it. I went into his office and felt FINALLY I’m not crazy. He put a plan together with a Pelvic Floor PT specialist, plus vaginal valium and started me on Gagapentin. I’m hopeful with this doctor and was so impressed with his demeanor. I’m finally diagnosed! My doctor did an exam I had never had before just using his finger and pressing on my pelvic floor muscles and asking many questions. I’m so happy my prayers have been answered!

  2. Thank you for this, Stephanie! Our patients depend on us to give the hope for healing. As a man thinketh in his heart, so he is! Once a person gets the diagnosis of “forever pain”, it becomes FOREVER PAIN! My patients look to me for hope as much as healing! The importance of positive guided imagery and CNS regulation cannot be overstated. Central sensitization can be tamed. I’ve seen it. Thanks again, my fellow encourager and pt advocate!

    Jovie

  3. Thank you for your thoughtful insightful reply. As a PN patient, I need all the support I can get, along with the league of others who are victims of the medical community’s lack of compassion and education.

    • Hello Loretta,

      Stay strong, things are improving but we need to keep working hard to make it better.

      All my best,

      Stephanie

  4. Thank you for advocating heroically and articulately for pelvic pain sufferers.
    Keep it up,
    Tamar Stern

  5. I appreciate the distinctions you are trying to make here. I have been diagnosed with IC for 7 years,and although I have little pain, the urgency and frequency I feel without medication would have me in the bathroom continually. Every time I read the word “chronic” I am in “crazy town”. I have tried to stay well educated on the subject but have to admit that most of the time that leads to more frustration and depression. When first diagnosed I was sure that somewhere, in all the information, there was an answer for me. Instead, I have come to realize that there are many people who are a lot smarter than I am who don’t have answers either. This disease has taken so much from me and my family, and despite seeing the best IC Dr. in the state(IN), following a way stricter diet than even the “IC OK” diet lists, and consuming a fistful of meds each night, it continues to get worse. I have asked the Dr. about PT, and she doesn’t know of any that treat IC and isn’t pushing that as a treatment (maybe b/c it is not available in our area). Can you suggest anything?

    • Hello Linda,

      I am sorry to hear that you are struggling. Many people who are on the road to recovery started out the way you feel now. In the majority of cases with symptoms similar to yours musculoskeletal structures are contributing. PT will likely help you get to the next level of improvement. Your physician may not be familiar enough with pelvic floor PT to suggest it.

      Where are you located? I may be able to offer you a therapist recommendation.

      Regards,

      Stephanie

        • Hello Deb,

          We recommend Core Dynamics PT, they are located about an hour away from Monmouth county. Below is their information:

          Core Dynamics PT
          Niva Herzig, MS,PT
          Englewood NJ
          201-568-5060

          Best,

          Stephanie

  6. I am being treated for pudendal neuralgia without much success. I have read an article stating that pulsed radio frequency has been moderately successful. Have you tried this treatment? Is it available in the San Diego area? You can reach me at badams@scrippslabs.com. Thanks so much.

    • Hello Bill,

      PRF can be a reasonable treatment option for patients. We refer our patients to Sheldon Jordan in LA for this. If you would like to come to LA for an evaluation I would be happy to provide you with a second opinion and make suggestions.

      Cindy Furey is in San Diego and a great resource. Below is her contact information:

      Cindy Furey, PT
      Comprehensive Therapy
      San Diego CA
      (858) 457-8419

      All my best,

      Stephanie

  7. Funny you should recommend Comprehensive Therapy Services. They have been treating me for over a year. I see Elizabeth Leeds there. I seem to have nerve pain in my pelvis which won’t respond to internal and external manipulation. I am better than a year ago but still in pain. I don’t think pulsed radiofrequency has been used much but I thought it may be an alternative. Any comments? Thanks for responding, I really appreciate it.

    • Hello Bill,

      If you are able to travel to our Los Angeles office, we may be able to offer you a second opinion. Please contact our office for more information. (424) 293-2305.

      Regards,

      Stephanie

    • Hi Bill,
      I am a patient and a physician who suffers from PN-if you have nerve issues that are not relieved by PT- you might want to consult with Dr. Lee Dellon in Towson Maryland. He is a peripheral nerve surgeon and he may be able to figure out what nerves are involved and if surgery is indicated. At the very least go to his website and call his office to get more information,
      I had surgery almost a month ago- a lot of post op pain, but the constant nerve pain of the pudendal nerve is gone- and I suffered for 31/2 years.
      Good luck!

  8. Great article Stephanie. Thank you for putting things in perspective. I have all the issues that you mentioned in your article. And it is confusing and has been hard to stay out of “crazy” as I research and work with my PT who is fantastic at Creative Therapeutics in Fresno CA. I so appreciate your blog and perspective. Thank you for taking the time to get good information out to those of us dealing with these issues. I am reading Explain Pain now. Having a PT that is educated in pelvic conditions is a must!! I don’t know what I would have done without her.
    I started with a urologist that would not send me to PT until I had a complete melt down in his office. Not something that I am proud of, but I am so glad that I did get the referral to PT and the therapy is making a difference for me. This has definately been a life changing experience for me. But I strive to be educated and to get better.

    • Thank-you for your kind words. It is unfortunate that physicians are uniformed about pelvic floor physical therapy. I am glad you have an effective team in place now and I wish you the best with your treatment.

  9. Hi Stephanie,

    I cling on reading your posts for a ray of light after I got diagnosed in Feb2014, thinking if everything failed, I might travel to you. Again, with this article, you made me cry of hope. These simple words ”you will get better” from someone knowledgeable is something we badly need to hear, as we don’t believe in it after so many treatment failures. I cannot thank you enough for this.

    However, I got operated of open appendectomy 4 weeks ago and got it still hurts like hell. I guess PT is out of question for now, but I was wondering when would it make sense to finally make my way to you?

    Thanks so much for being there!
    Vanessa

    • Hi Vanessa,

      Thank-you for your kind comment. In most cases, physical therapy is safe to start at 12 weeks post-operatively but still should be cleared by the surgeon. If you call our office we can likely refer you to a PT in your area who can help you. I am also happy to see you hear in LA.

      • Many thanks Stephanie, so pleasant to read you. I live in Amsterdam, The Netherlands (Europe). 3 months it is then!
        All the best,
        Vanessa

  10. Pingback:What’s new in pelvic health? Reading homework included. | Jessica Reale, PT, DPT, WCS

  11. Hello, and thank you for such an interesting article.

    I am a 23 year old male who for the past 3 years has suffered from, what I believe to be, pudendal neuralgia. As many of you know, the symptoms have been debilitating, often downright paralyzing. You really feel like life isn’t worth living. I’ve been seen my countless doctors-uro’s, neuro’s, etc-who have all dismissed my condition as some psychological issue. Heck, I’ve even seen some PT WHO “SPECIALIZE IN PELVIC PAIN” about my condition. They wrote it off as a case of interstitial cystitis, though I knew it could not be that given the numbness and loss of sensation in the genitals, along with shooting pain in glutes and piriformis when sitting.

    Anyway,if there are any sources for help to treat males, I would really appreciate being pointed in that direction.

    Also, if anyone knows of a doctor or PT in the Miami-South Florida area, please pass along their contact info.

    Thanks!!

    • Hello Anonymous,

      I’m sorry to hear about your situation, and can certainly understand your frustrations. Pamela Downey, DPT is located in Miami and may be a good resource for you. Her information is located below:

      Pamela Downey, DPT
      Partnership in Therapy
      305 666-3232

      Best,

      Stephanie

  12. I am a male 71 years old and have been experiencing PN pain for about three to four years. I believe this started with me when I was riding a bicycle for exercise and was compounded by sitting for hours on end while writing a book at my computer. I am self-diagnosed from reading articles like this on the internet. I spent pretty much a year making the rounds of Doctors who never could discern what was wrong with me or where the electric shock pain I was getting in my scrotum was coming from. The last doctor did four ultrasounds but all of my prostate and genitals. He gave me a huge bottle of hydrocodone! I have managed not to take any and have found some relief from a special cushion i use when sitting. I recently switched to a standup desk and now alternate between sitting and standing to lessen the impact on my arthritic knees. I’ve gotten some relief from acupuncture but I have found no therapists here in Eastern NC where I live that are even aware of this condition. I live day to day with little sparks of electricity burning in different parts of my body but I have thus far avoided any more torture like electric shocks. I try very hard to stay upbeat and avoid stress and depression which seems to make the condition worse. Information like this has kept me out of a black hole.

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