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Pudendal Neuralgia

I’m part of Bridge For Pelvic Pain’s Advisory Committee

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Bridge for Pelvic PainAnd I’m most honoured! To be recognised for my pelvic pain advocacy is one very exciting aspect, but to be invited to be part of a committee with a global vision, is quite an additional excitement. It appears my pain experience will definitely make a difference to others.

About Bridge For Pelvic Pain

Mission: Our mission is to connect the global community of chronic pelvic and sexual pain patients to resources, education and hope through an integrative approach. Vision: To bring hope, resources and knowledge to the pelvic and sexual pain community worldwide. Continue Reading

Committment, sacrifice and granting myself the right permissions

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Soula In TassieLast week, I attended my last acupuncture appointment and for the first time in over seven years, am therapist free. Hang on, I have to just repeat that:

I am therapist free

Did I ever think this day would come? Of course I did and I believe that’s why I am here.

I have had my moments, but what I didn’t realise through all that heat and whilst pacing like a snail, was that each flare up and pain episode was actually not an indication that pain was here to stay, but rather that it was actually beginning to leave. Although just a difference of minutes initially, eventually I felt the flare ups spreading further apart. And with recognising that change and NOT increasing my capacity past a snail’s shell weight, I began to make progress. Continue Reading

Blog | Sexology 101 | The Internal Clitoris

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Museum Of Sex Img_0927Hallelujah! Pardon my pun here, especially as I’m preaching sexuality on a Sunday morning but finally, here is some thorough research and attention for the clitoris. Thank you Louise Smith for sending this link to me.. I think it’s essential info for everyone, not just women with PN. Thank you melodiousmsm for writing this and thank you to artist and sex educator, Betty Dodson for the fabulous artwork.

(excerpt from The Internal Clitoris. Read full post here)

…Let’s also remember, female orgasm is not solely about the clitoris and vagina either. It is far more complex and also involves the workings of multiple nerves, tissues, muscles, reflexes, and mental effort. Some women can think themselves to orgasm. Others can orgasm simply by flexing their pelvic muscles. Considering all the components involved plus the variability of human beings and their anatomies, it’s extremely important to remember no two people are the same. What works for one woman may not work for another. In other words, it’s all custom under the hood….

…What really blows my mind is the plethora of misinformation that exists in textbooks, professional medical guides, and on the internet. Take for example, in one of my undergraduate textbooks titled Understanding Human Sexuality, the clitoris is depicted merely as just the glans. The sad fact is it wasn’t until the 1990’s that researchers began using MRI to study the internal structure of the clitoris. By then, the intricate details of the penis were already well-known.

(Some of you may find these drawings explicit. You may also have to turn off your ‘safety’ to watch this)

Continue Reading

Festive cheer or is it festive fear?

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Christmas WrappingI’ve come to another checkpoint, the end of the year always seems to call for a summary and with PN I won’t be summarising any grand bonuses, monumental achievements or any other events that suffice to the amount of days and hours that passed. In fact, the biggest blocks of time go on rest, treatment and wondering if this pain is actually ever going to end.

When I hear ‘festive cheer’ I can’t help but rhyme it with ‘Festive fear’, are you terrified at this time of year? Festivities call us to get out of the safe daily zone, step into marathon entertaining, baking, wrapping, socialising, a time to move away from our therapists and their treatments (Lord knows they need a break!) and jump! It’s impossible not to wonder, how will this end for my pelvis?

I know that sounds negative for someone that managed to finally get back into the studio, made Christmas wrapping (above), who contributed to her design company, who directed Art and Chronic Pain – A Self Portrait, and who wound up planning a documentary to create awareness for the very issue that holds her up day in day out, but, I’m slowly realising although I progress, PN is consuming my life more and more (and Theo’s!). PN has infested into my creativity, it’s become a monster outside my body as well. A monster now guiding me to forget my privacy, suck up the imposition and ego, and play a lead role in the name of PN awareness. How on earth did it come to this? And where on earth is it going? (You won’t believe what’s next!!) PN is truly fixated on me, in me, around me, it’s becoming the PN never-ending story. I can’t help but wonder at times, at what the point did this become my job? Continue Reading

The Hurting Strings, my crowd funding campaign

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Campaign message

Now here’s something I didn’t see coming, my pain journey being transformed into an educational documentary about Pudendal Neuralgia (PN). And I have to warn you, there won’t be much smiling and hiding of pain if this happens.

One of those strange-but-true occurrences in life found me introduced to handmadefilms.com.au and I now have a unique opportunity to help with my PN message. The intended outcome is to have a documentary film made that will be free for practitioners, therapists and people in pain around the world, and for them to share for educational and therapeutic purposes.

Early diagnosis of PN is crucial for quality of life, in fact if I had been diagnosed sooner, I believe I would not have such a serious life long pain issue now. I want to change this bad life experience into something good… into Pelvic Pain education. I’m hoping you can help me raise some of the production costs.

Watch below and contribute via PayPal. Follow our progress by subscribing to The Hurting Strings feed.

Thank you.

The Hurting Strings, an artist’s story of pain from Soula Mantalvanos on Vimeo.

Soula’s PN Weather Update

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Soula's PN Weather Report

Soula's PN Weather ReportIt’s been a while since I posted a personal update but it’s probably accurate to say that PN’s weather patterns need to be documented seasonally. I mostly have turbulence, like it’s sunny one day/stormy the next, or otherwise described as I take two steps forward and about 1.9 steps back. It’s incredibly frustrating. So rather than report all the fluctuating details in between, it’s best to leave some months go by to really figure out the progress. So now, the months have gone by and I can deliver to you, Soula’s PN weather update for September 21, 2013. Continue Reading

Desktop mag: Creative Practice & Pain Management

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(Article from Desktop Magazine’s feature article: Creative Practice and Pain Management)
Written by Soula Mantalvanos

Origin of Image is a multidisciplinary design studio based in Collingwood that is managed by professional and personal partners, Soula and Theo Mantalvanos. Soula has a rare condition called ‘Pudendal Neuralgia’ which on some days can be completely debilitating. Here she shares some insights into her daily routine, and offers some advice for practitioners dealing with similar predicaments. Continue Reading

Sharing Barry’s experience with Male Pudendal Neuralgia

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October 2017 update: Since writing this post back in June 2013 I’ve had the pleasure of cyber meeting Dr Susie Gronski who specialises in male pelvic pain. Please follow the links or go to www.drsusie.com as she has a wealth of information and knowledge to share and she can belp you, even via your computer!


As many readers to the site will know I don’t encourage contact. I simply can’t maintain it, and most certainly most times I have had contact I can’t help but be drawn back into the dreaded sitting and typing position through feelings of compassion, empathy, or to communicate a new perspective or treatment in the hope of helping others with Pudendal Neuralgia (PN). Barry’s story, I felt was important to add to the site.

Most women with PN have felt lost at some point but as time goes on and word spreads, I believe treatment and understanding is more widely found for women. I’m not so sure for males though. I’ve had a few males battling PN contact me, and although they’re not in Barry’s end of the world I felt this email had to be shared.

Barry it’s been a pleasure to cyber meet you. Thank you for allowing me to share your story and thank you for alerting me to How do I know if I have PN or PNE?

Hi Soula,

Thank you so much for your kind response. If I remember you are not in the US
. Either way I do understand the not wanting to talk. It seems most of my friends have disappeared. I know this is because people don’t want to be reminded about or hear about bad news or pain. Kind of a shame when you need love and support, just like in a divorce, it’s not there.

I have a wonderful 2nd wife now 18 years and without her I’d be gone. 
I use Facebook only to see some family pictures from Florida (my wifes family) 
I’ve lived here in Delaware since December 2011 and have not had a block since. I already had 6 Pudendal Nerve blocks and this after so many other procedures:
 5 Ganglion Blocks, 6 Caudal Blocks, 2 Botox injections, 2 Radio Frequency Ablations, 2 Neurostimulator Trials, an Interstim Impant, and then the 6 Pudendal Nerve blocks.

Endless research and finally putting the right two words together on Google, opened up the world of Pudendal Neuralgia (Neuropathy) to us. That was near the end of December 2010.  On the day after New Years and in response to two letters I sent to two Dr’s names I had found, I got calls from both Dr’s the same day.

The first one was supposed to be a well-known Neurosurgeon who claims to have been on Oprah and Dr Oz TV shows. He was once affiliated with Johns Hopkins. Here is where it gets bizarre. He told me that I definitely had PN and I needed to get the Pudendal Nerve Entrapment surgery immediately. With further discussion I learned that he was not on our Blue Cross Health Plan or any Insurance. Then I asked him how many he had done and he replied that he has done extensive research. Further chat revealed that all of his experience was on cadavers. I decided not to be his first live patient. This was so bizarre.

The 2nd, Dr Mark Conway from New Hampshire had been in France working with the Doctor there who pioneered the surgery. He was very compassionate and told me I’d need to have some testing at his office in New Hampshire. I had also contacted Dr. Stanley Antolak in Minnesota. He was much further away and Minnesota in the wintertime is brutal. He also had a whole network set up including a Physical Therapist, which for men there are basically none. This seems to be more prevalent in women.

My wife and I flew to Manchester New Hampshire. Dr Conway was actually an OB-GYN and man was that a weird feeling. When I saw him I asked how many of his patients were men and he replied about 40% from all over the US. He did some testing and diagnosed Pudendal Neuralgia. The same day, he arranged for me to have my 1st Pudendal Nerve block with Dr. Jorge Quesada at Eliot Hospital in Manchester, New Hampshire. We flew back to Maryland the next day. The block lasted about a month, so off I flew to New Hampshire again. In all I hit New Hampshire three times.

On December 2nd, 2011 I was scheduled for a full knee replacement in Delaware, and I was still in agony. There was no way I could do it and I could not get a flight to New Hampshire due to Thanksgiving and no seats available. Feeling helpless and being unable to walk, I had just about given up hope when a small miracle happened. A young lady (actually a Nurse in Virginia) I had been in contact with sent me an email with the name of Dr. Christian Muller, a radiologist that ran a pain clinic in Fairfax Virginia. I called his office and learned that he would do the Pudendal Nerve block. They got me in the day after Thanksgiving and he was a wonderful man. Although he does not believe in the Pudendal Neuralgia diagnosis (he keeps telling me it Non- Bacterial Prostatitis), he did the Pudendal block with a CAT scan for more accurate needle placement. This proved to be the best block yet. It got me thru the knee replacement and Physical Therapy and lasted about 6 months. Since then I’ve had the 5th and 6th Pudendal Nerve blocks with him. Now I have moved to Delaware and there is no one anywhere nearby, even in Philadelphia that will do this block. Dr Muller is a three hour drive, and as I said sitting is the hardest part.

Then I heard about the contaminated Nerve Block medicines that were in Massachusetts and that people were dying even a husband and wife, who had blocks the same day died. I think there had been mold growth in the medicine, and these people died very quickly. This combined with a very cracking lower spine from all these procedures, has me scared and on hold for now. I am somewhat improved, but I need the other knee done. In addition I will need the Interstim battery replaced in about a year, and there again is no one near here that can do it. It was implanted at George Washington Hospital’s Hospitals Pelvic Floor Center in Washington, DC – also a three hour plus ride and with no parking and no place to stay for the follow-up. In addition I have four kidney stones two on each side.

If you have gotten this far in this long email, I thank you for that. The frustration of being male, having few Doctors that believe in the diagnosis, and the inability to find a Physical Therapist that will work on a man, has left me with incomplete treatment and knowing there is no real cure. My family (other than wife) are not helpful as my brother constantly reminds me that at least it’s not cancer.  I’m in my late 50’s and he is a 62-year-old Attorney with very few health issues.

I  continue to hang in there. I am on Social Security Disability, and don’t get out much. My wife who is older is patient with me, but she has her own issues and recently retired.
 We sold our house in Maryland for a very low price and moved here to Delaware to what was a vacation type home. We love living here but finding Doctors is a huge problem.

Again, thanks for your time, and if there is ever anything I can do for you, please contact me.

Warm Regards

Barry

How do I know if I have PN or PNE?

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Pelvic Health Rehab Centre
Excerpt from www.pelvicpainrehab.com

February 27, 2013, Posted by Stephanie Prendergast

Part I in the “Demystifying Pudendal Neuralgia” Series

For so many the term “pudendal neuralgia” conveys a frightening and mysterious chronic pain diagnosis. And to be sure, at one time, receiving a diagnosis of pudendal neuralgia, or “PN” as it’s commonly called, was truly terrifying, especially considering that it was against the backdrop of a medical community that didn’t have answers and an online community rife with misinformation.

However, “pudendal neuralgia” literally means “shooting, stabbing pain along the distribution of the pudendal nerve.” So in reality, pudendal neuralgia is not a dark, mysterious diagnosis, it’s simply pain anywhere along the nerve that innervates the pelvic floor.

While progress has been made in the treatment of PN over the past decade, there continues to be a tremendous amount of confusion swirling around the diagnosis, not the least of which is the massive confusion surrounding the difference between the diagnosis of PN versus the diagnosis of PNE and what is the appropriate course of treatment for each.

In this post, I’m going to tackle those two points. But, that’s not the last you’ll hear about PN on this blog. It’s a topic I’ve spent my career embroiled in, and it’s one that I’m passionate about.

So this post marks the beginning of what will be a series on PN. Further posts in the series will tackle PT as a treatment for PN, the PNE decompression surgery, the current use of the “Three Tesla MRI” as a test for PNE, and the role of central sensitization in PN.

A Tortuous Course

Before I get into PN versus PNE, I want to first give you a brief explanation of the physiology of the pudendal nerve and the diagnosis of PN.

The pudendal nerve is a large nerve that arises from the S2, S3, and S4 nerve roots in the sacrum, and divides into three branches—the inferior rectal nerve, the perineal branch, and the dorsal clitoral/penile branch. The nerve travels a tortuous course through the pelvis to innervate:

• the majority of the pelvic floor muscles,
• the perineum,
• the perianal area,
• the distal third of the urethra
• part of the anal canal
• the skin of the vulva, the clitoris, portions of the labia in women,
• and the penis and scrotum in men.

The pudendal nerve travels a torturous course through the pelvis.

Patients with PN can have tingling, stabbing, and/or shooting pain anywhere in the territory of the nerve. Symptoms include vulvar or penile pain, perineal pain, anal pain, clitoral pain, and pain at the ischial tuberosities as well as pain with bowel movements, urination, and orgasm.

One of the things that make the pudendal nerve so unusual is that it doesn’t just have motor and sensory fibers like other nerves that exist outside of the brain and spinal cord, it also has autonomic fibers.

Here’s the significance of this unusual quality: Motor and sensory fibers innervate somatic structures, like muscles, giving us voluntary control over them. Whereas structures innervated by autonomic fibers are not under our voluntary control. The heart, lungs, and GI tract are examples of such structures.

So it’s thanks to the autonomic fibers of the pudendal nerve that our pelvic floor muscles always maintain a degree of tone, which enables us to remain continent. But we do have the ability to override the tone in our pelvic floor muscles and further contract or relax them when we wish. So, the pudendal nerve is only partially under autonomic control.

What is the relevance of this to our discussion of PN symptoms? Well, it’s because of these autonomic fibers that patients with PN can experience disturbing feelings of sympathetic upregulation when their pain spikes. Symptoms such as:

• an increase in heart rate,
• a decrease in the mobility of the large intestines,
• a constriction of blood vessels,
• pupil dilation,
• perspiration,
• a rise in blood pressure
• goosebumps, and
• sweating, agitation, and anxiety.

I’ve had many patients that have reported these symptoms. Many have told me that they thought they were going crazy or were having an anxiety attack at those times. So it’s important that patients are aware of this feature of the nerve. They’re not crazy! And with the proper treatment, these symptoms can be stopped.

The Pudendal Nerve in Men

PN vs.PNE

In order to best understand the differences between PN and PNE, you need to have a sense of the history of both diagnoses.

I began working with pelvic pain patients in 2001. Back then, nearly every patient I saw had been suffering for at least five years, often longer, had seen an average of ten other providers, and was in tremendous pain. Across the board, these patients had been dismissed, misdiagnosed, and mistreated.

However, when I came into the pelvic pain picture, a shift was happening in the medical community. It was sinking in that pelvic pain was a valid health issue that needed to be addressed. “PN,” “vulvodynia,” and “IC” were all diagnoses that had individually made their way onto the scene, but collectively they were now being handed down to patients with more frequency. So, for instance, a patient who had been told her symptoms were “all in her head” was now given a diagnosis of “PN.”

What did it mean to be diagnosed with PN back then?

Because this was a patient demographic that had been mistreated for so long, for the majority of these patients, their pain had become ingrained in their nervous systems. So as a result, the treatments that were administered, such as nerve blocks, medication and PT were not successful because they were only aimed at the periphery of the patients’ pain, not the peripheral and central nervous systems. Plus, there wasn’t the same level of understanding of the myofascial musculoskeletal component of pelvic pain or the need for a multidisciplinary approach to treatment that there is today.

Then sometime around 2003, pudendal nerve entrapment or “PNE” became the diagnosis du jour. PNE was first mentioned in 1988, but became popular as a diagnosis around 2003, most likely because of chat rooms about the condition on the Internet.

PNE is most commonly defined as a physiological entrapment of the pudendal nerve that requires surgical release. While “PNE” can certainly cause PN, it’s far from the only cause. However, one of the symptoms of PNE at the time was “pain with sitting.” Therefore, anyone who had pain with sitting, all of a sudden had nerve entrapment. Plus, the terms “PN” and “PNE” were suddenly becoming used interchangeably. So too often, as soon as there was the inkling that the pudendal nerve was involved in a patient’s pain, he or she was told entrapment was the cause and three nerve blocks and decompression surgery was the answer.

Clearly, providers were systemically over diagnosing patients with PNE. Intentions were in the right place. Providers wanted to successfully diagnose and treat their patients, and patients, for their part, wanted to get better.

PNE had emerged in the literature as a diagnosis in the 1980s when almost nothing was known about myofascial pain and chronic pain syndromes in general. Surgeons and anesthesiologists in Europe were the first ones to take an interest in PNE, and as a result the treatment methods that were developed focused on nerve blocks and decompression surgery.

Electrophysiological testing also fell within the bailiwick of this particular group of physicians, so these are the testing methods that were used to determine PN/PNE. (Remember, for a period of time the two became muddled together.) So if PN/PNE was suspected, a pudendal nerve terminal motor latency test or a “PNTMLT”, which is a nerve conduction velocity test was administered to “verify” the diagnosis. Next, patients were given three nerve blocks and medication.

For its part, A PNTMLT is a test that measures nerve conduction velocity times. The test is administered by inserting a small needle into the ventral external anal sphincter (the portion innervated by the perineal branch of the pudendal nerve). The doctor than inserts a gloved finger with an electrode into the anus and delivers a charge to the perineal branch of the pudendal nerve at the ischial spine. The recording needle electrode captures the amount of time it takes for the signal to get from the ischial spine to the sphincter. If the time is “delayed” the test is considered to be positive. This test is incredibly painful and can cause a flare that can last for weeks. Plus, at the time of testing, the secondary muscle spasm associated with the pain of the test often makes its readings unattainable.

Historically, with or without the results of a PNTMLT, the next step to treating PN/PNE was to administer nerve blocks and medications. The nerve blocks were painful and provided about four hours of relief at best, and the medication either did not help or caused side effects that were worse than the pain itself.

When that protocol failed (and it almost always did for the above mentioned reasons), the next step on the treatment train was decompression surgery. Patients were told the longer they waited to get the surgery the worse their pain would become. To further complicate matters, for a time, the only surgeons who did the surgery were in France. So patients were traveling to France en masse to have the surgery done.

Fast forward to the present day. Today there’s been a great deal of progress made in our understanding of PN and PNE.

And one of the biggest discoveries is that there is no way to know whether a patient has pudendal nerve entrapment prior to operating. I’m going to say that again because I think it bears repeating: There is no way to determine whether or not someone has pudendal nerve entrapment prior to surgery.

And in fact, the only way to know with any certainty whether there was indeed an entrapment post-surgery is a post-operative finding of pain relief. This is according to research conducted by neurosurgeon, Prof. Roger Robert, and neurologist and urologist, Dr. J.J. Labat, the team of French surgeons that developed the initial surgical technique for the PNE decompression surgery.

No Way to Know

By 2008, several groups of leading PN experts conducted studies and discredited the electrophysiological tests as diagnostic tools of PN/PNE. (A great paper that summarizes the numerous studies that led to the invalidation of the tests is “What is the Place of ENMG Studies in the Diagnosis and Management of Pudendal Neuralgia Related to an Entrapment Syndrome?” by Lefaucher, J.P., Labat, J.J., Amerenco, G., et al.)

In early days when the medical community was working to make heads or tails of a PN/PNE diagnosis, it seemed logical to apply the testing to the diagnosis. After all, it was the protocol used in other parts of the body for neuralgia and entrapment. So why wouldn’t it work for the pudendal nerve? The reason is that pudendal neuralgia and PNE is a sensory problem – pain – and this test measures the speed of motor fibers. We can not correlate the nerve conduction speeds of pain.

There are surgeons who say they believe that they can see entrapment when they open the patient up, that they can see nerves that are grey and look frayed; however, there’s not that much correlation between the levels of pain the patient has, and the doctor’s visual. Plus, surgeons are not operating on asymptomatic individuals, so we don’t know if the asymptomatic population looks the same anatomically. Therefore, it’s a big assumption to say you can see entrapment when we don’t know what “normal” is.

Today PN patients are having MRIs done. (More details on this in the fourth post in this series.) For their part, MRIs can show that there is swelling around the nerve. However, issues other than entrapment, can cause swelling, so again, this is not a appropriate diagnostic test for PNE.

So although patients continue to have these tests done and even to rely on them for proof of entrapment and PN, the fact of the matter is that all the accepted thinking in the field, even by the surgeons who perform the decompression surgery, is that the tests do not confirm either entrapment or pudendal neuralgia.

The History is the Key

The most important factor in deciding whether or not a patient has a possible entrapment is the patient’s history. In fact, this is the thinking espoused by one of the country’s leading PN physicians, Dr. Michael Hibner.

For example, if a patient who had no pelvic pain, had pelvic reconstructive surgery, and woke up from the surgery with shooting, stabbing vaginal pain, then that is likely an entrapment that probably needs to be surgically released. However, if a patient has had seven yeast infections in a row, and develops vaginal burning, it’s not reasonable to conclude that a ligament is entrapping the nerve and causing those symptoms. Connective tissue dysfunction and hypertonic muscles are more likely the cause.

So before a patient, or a surgeon for that matter, goes forward with a nerve decompression surgery, they need to be sure that the patient’s history makes sense.

Some in the medical community, myself included, believe that there are only two hard and fast situations where a nerve will likely be entrapped. One is an anatomical deviation that the patient is born with, and the other is as a result of a problematic pelvic surgery, such as a hysterectomy or a pelvic reconstructive surgery to correct a cystocele, rectocele or prolapse. If a patient has a slow, insidious onset of pain that eventually becomes burning, then that’s probably not entrapment but rather myofascial pelvic pain that is affecting the pudendal nerve.

When PN Plays a Role 

By this point, I hope that I have made it clear that the diagnoses of PN and PNE are not interchangeable and that there are no tests that can show if the pudendal nerve is entrapped or that a patient even has PN.

So then how do you know if you have PN?

Today, a diagnosis of PN is a clinical diagnosis, which means the diagnosis is based on signs, symptoms and medical history of the patient rather than on laboratory examination or medical imaging. Generally, PN symptoms are said to include burning, stabbing and/or shooting pain anywhere in the territory of the nerve.

Plus, a provider can examine the patient’s pelvic floor internally via the rectum or the vagina and upon examination test the pudendal nerve by performing a technique called a “Tinel’s Sign. A Tinel’s Sign is a way to detect irritated nerves. It is performed by lightly tapping over the nerve to elicit a sensation of tingling or “pins and needles” in the distribution of the nerve.

As you may have already realized, many of these symptoms overlap with symptoms of other pelvic floor problems. This can make it difficult to arrive at a definitive, iron-clad diagnosis of PN.

However, at the end of the day, as is the case with most pelvic pain syndromes, not being able to have a written-in-stone diagnosis isn’t a big loss because with pelvic pain, the diagnosis doesn’t dictate a treatment protocol. In fact, there is no standard, one-size-fits-all protocol for treating PN. Not to mention the fact that more often than not, there is going to be a combination of causes. So at the end of the day, if you think about it, “pudendal neuralgia” is more of a symptom than a diagnosis, anyway.

Remember, “pudendal neuralgia” means pain along the distribution of the pudendal nerve. So saying “I have pudendal neuralgia” is analogous to saying “I have burning or stabbing clitoral, vaginal, or penile pain.”

So when it comes to pudendal neuralgia, the most important course of action is to figure out the underlying causes, and then figure out what needs to be done to treat them.

PN Treatment Today

In wrapping up this post, after having spent so much time talking about what not to do when it comes to PN, I’d like to spend some time discussing the actions I do recommend for patients when pudendal neuralgia is suspected. Thankfully, today patients have more reasonable, comprehensive treatment options. The best course of action is for them to approach their treatment with a multidisciplinary team approach in mind.

PT

An important player in on a multidisciplinary team to treat PN is a pelvic floor physical therapist.

At the end of the day, pudendal neuralgia is a myofascial pain syndrome that affects the nerve that innervates the pelvic floor musculature and viscera, so a PT who is expert at treating the pelvic floor should be able to address why that nerve is irritated.

However, many patients are afraid that PT will further irritate their pudendal nerve. Perhaps they’ve read on an online message board that this has happened to others with similar symptoms. Here’s the deal: PTs do not learn about treating the pelvic floor in PT school let alone how to palpate the pudendal nerve. So if a patient sees a PT that does not know their way around the pudendal nerve than yes, that PT could irritate their nerve. That’s why it’s important for the patient to do his or her homework and make sure the PT has proper level of expertise to treat them. (Our next post will delve much more deeply into PT for PN.)

Medication

There are a handful of medications that are helpful for PN. One group is SNRIs, which are aimed at calming the central nervous system, such as Cymbalta. Other anticonvulsant drugs such as Lyrica, and Neurontin are also often top choices in this group.

Another group includes tricyclic antidepressants, such as amitriptyline, nortriptyline and desiprimine.

When working with meds, patients need to realize that they must get to the proper therapeutic dose for the proper length of time before they will experience a medication’s effectiveness. In addition, just because the medication doesn’t take away all of their pain, this doesn’t mean it is not having a therapeutic effect.

Nerve Blocks

In the past, I would have said that pudendal nerve blocks are not therapeutic. However, I believe the reason they did not work for my patients in the past is that the patients that were getting them early most likely had central sensitization due to the severity and the chronicity of their pain, and therefore any treatment directed at the periphery, whether a block, medication, or PT was not going to be as effective as it could be.

However, today, patients are getting diagnosed much earlier in the game; therefore, I believe all of the treatments aimed at the periphery, such as nerve blocks, are having higher success rates.

That said, nerve blocks should never be a patient’s only course of treatment. They are not going to be a silver bullet cure-all. Much of the time, the lasting effect on the patient’s pain is very minimal. If there is a long term effect, it will be that once the anesthetic wears off, the patient will have a little less sensitivity.

So bottom line: my advice is that if a patient has access to a physician in their community who has a reputation as being an expert at administering nerve blocks, and their insurance covers the block, then they should give it a try with the expectation that at best it may help and at worst it may cause a temporary flare. However, if the patient has to travel to another state and spend thousands of dollars to get it done, the possible benefit is not likely worth the travel and expense.

Botox for PN

Botox is very good for muscle hypertonis, which is associated with PN, so if a patient (typically with the direction of their PT), is suspicious that the obterator internus is a large part of their pain/nerve irritation, then Botox may make sense.

A good test run is to have the physician first inject lidocaine into the area to see if there is a positive effect. If some or all of the patient’s pain is reduced or eliminated during the first hour after the injection it may make sense to then inject Botox. One reason for this approach is that Botox is quite expensive, so it’s a good idea to make sure it’s going to be injected into an area that is relevant.

I mention the obturator specifically because that is a muscle that is commonly involved in PN because part of the Alcock’s Canal is made up of the aponeurosis of the obterator internus and so if there is compression in that canal, decreasing the hypertonis will take some of the pressure off of the nerve in the same way that decompression surgery would. So in fact, in such a situation where the nerve is compressed, either Botox or manual therapy can serve to free it up instead of surgery.

I hope this post has fulfilled my goal of shedding light on a few areas of the PN diagnosis that continue to cause confusion. It’s a complicated diagnosis that thankfully is beginning to make more sense, but there’s still a lot of work to do. Speaking of, stay tuned for the next post in our pudendal neuralgia series, which will focus on the role of PT for PN. Be sure and subscribe to the blog if you haven’t already, so you’ll get the next in the series as soon as it’s posted.

In the meantime, if you have any questions or comments, please leave them in the box below. I look forward to hearing from you.

All my best,

Stephanie

About Stephanie Prendergast: Stephanie is the co-founder of the Pelvic Health and Rehabilitation Center, president of the International Pelvic Pain Society, and an organizing member of The World Congress on Abdominal and Pelvic Pain. She has written extensively on the topic of pudendal neuralgia and teaches a course titled “Demystifying Pudendal Neuralgia: A Physical Therapist’s Approach” for physical therapists.

Interpretive Dance about living with IC & Pelvic Pain

Author:

 Interpretive Dance about living with IC & Pelvic Pain

An incredibly effective form of communication for Internal Cystitis (IC) and Pelvic Chronic Pain.

Certainly captures everything I’ve felt and everything I hope; release those chains! And how true that they are depicted with such weight. Absolutely loved this. Donna Massa-Chappee congratulations. Thank you for expressing this so clearly, for your understanding and for taking the time to help others.

Watch the YouTube movie: Interpretive Dance about living with IC & Pelvic Pain

Artist’s statement:

An interpretive dance using the combination of modern dance and classical ballet to express the trials and tribulations of living with Interstitial Cystitis (IC) and Pelvic Pain Disorders. It is about a women who has been diagnosed with IC and experiences an incredible dream. In her dream she relives every emotional detail of fighting through chronic pain: frustration, isolation and embarrassment. During the dance there are symbolic props used to identify with the symptomatic problems she endures when dealing with these disorders. In the middle of the dream the woman surrenders to acceptance, letting go of its grip, and moves on to the final stages of the healing process resulting in joy, happiness and freedom. In the finale of this piece, during the awakening stage of her dream, the woman expresses an uplifting revelation of bliss, for there is no more anguish and pain or the chains that once bound her… Continue Reading

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Definitions of pain

What is Pudendal Neuralgia (PN)?
Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggravated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

What is Neuropathic pain?
Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. More…

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