Pudendal Neuralgia: Hopeful Not Hopeless!

Pudendal nerve entrapment and pudendal neuralgia are two words that often get used interchangeably in the pelvic health world. They rank right up there with some of the “scariest” diagnoses that patients believe they are suffering from when they present to their doctor’s office with pelvic pain. To look at how this plays out in someone’s life, let’s take a look at Tom’s story. Tom has had pelvic pain for almost 2 years. His pain developed suddenly, following an episode of masturbation. This would appear to be an “overuse” or “repetitive strain” type of injury that clearly does not cause an entrapment of a nerve. However, that did not resonate with Tom’s belief system, and what he had been told. He was convinced that he had pudendal nerve entrapment. How did this affect his therapeutic journey?

 

One of my first questions for Tom was, “So Tom, what do you think is causing your pain?”

 

“Well, I know I have some type of pudendal nerve entrapment. A portion of my pudendal nerve is bound down near the sacrospinous ligament.” (consider the mechanism of injury). “I’ve had 2 nerve blocks at this point but they keep missing the nerve because I’ve had no pain relief either time. I’ve also seen an osteopath, an acupuncturist, a pelvic floor physiotherapist, an RMT, a world-renowned radiologist in the United States who specializes in diagnostic imaging within the pelvis. No one seems to be able to find and get rid of the source of my pain. The MRI report read “there appears to be mild thickening of the sacrospinous ligament but otherwise, it is unremarkable.” How can the MRI not show more significant damage, when my pain seems to be worsening with each passing day? And now I have foot pain too. I get the whole mind-body connection. I meditate daily and I always try to relax but how can I truly relax when my pudendal nerve needs attention.”

 

Let’s rewind his story a little bit. Tom is a 29 year-old male who has recently completed two university degrees, and is currently unable to work in his chosen field as a result of his pain. On initial assessment, he scored 48/52 on the Pain Catastrophizing Scale (PCS) (for more info: http://sullivan-painresearch.mcgill.ca/pcs1.php) and 59/68 on the Tampa Scale for Kinesiophobia (for more info: http://www.tac.vic.gov.au/__data/assets/pdf_file/0004/27454/tampa_scale_kinesiophobia.pdf.) For those of you not familiar with these outcome measures, both of these scores strongly suggest the presence of central pain mechanisms. Tom told me his story from a lying position, as Tom does not sit anymore. Ever.

 

On assessment, I did find some tension within his connective tissue and muscles of the abdominal wall and pelvic floor; nothing that a few sessions of manual therapy wouldn’t resolve. I wasn’t concerned. I started him with some dynamic range of motion exercises, as well as spending 10 minutes each day in a constructive rest position. The goal of the constructive rest position is to unload the pelvis, finding a position of comfort, focusing on calm breathing and letting tension go in the pelvis, spine and abdominal wall. These exercises were used to introduce novel, fluid movement into his sensori-motor cortex to work on gentle, dynamic remapping of his brain. The constructive rest position gave Tom’s nervous system a chance to find a way to self-soothe and let go of the guarding that he had become so good at.

 

Given the objective information I obtained from Tom (specifically his PCS and Tampa scores), I knew that Tom and I needed to focus our first few sessions on pain education, specifically neurophysiology-based pain education. This form of education has been shown to be the most effective treatment approach when a patient is presenting with pain that lasts longer than three months (Moseley, 2003). As you may recall, Tom told me he really understood “the mind-body connection”, and reminded me how much reading and meditating he has done in the past – “I spend the bulk of my day, reading online about my condition and trying to find the right people to help me. I know it’s important to relax and meditate so that my brain can relax, so I do that also.”

 

Tom knew everything that there was to know about the anatomy of the pelvis and the pudendal nerve. He knew the pelvic floor muscles better than most orthopedic physiotherapists. His patho-anatomic knowledge was awesome; however, this has not been shown to reduce pain. On the other hand, Tom did not understand that pain was produced by his nervous system to protect him from actual or potential harm. What I really have started to understand as a clinician, is how important it is that a patient re-conceptualize their individual pain experience. This means that they actually have to change their thoughts and beliefs about their pain. This takes a lot of discussion and challenging beliefs without making the patient feel that you are undermining everything that they hold to be true. It is a bit like first finding out that there is no Santa Claus when you are a child. Children have to reconceptualize Christmas when their belief in Santa Claus has been challenged. Research will tell us that we are not doing enough, in simply providing a patient with persistent pain a book to read, and trusting that it will change the way they see their pain (Moseley et al., 2013).

 

During the “Explain Pain” course, I learned first-hand from David Butler that using simple examples and anecdotes to teach patients that pain does not come from the tissues, is hugely beneficial (Moseley et al., 2013). With Tom, I used a simple example of a cut to my finger, to illustrate that even though the tissue damage remains in my finger (likely taking a couple of weeks to heal completely), once my brain has attended to my cut, and I know that it is no longer a danger to me, pain production ceases. This is a universal truth that opens the discussion about pain; however, the illustrations should then become more personal and reflect your patient’s interests and specific beliefs. It was a series of analogies such as this that allowed Tom to learn that the brain 100% of the time produces pain. This allowed him to change his belief that he had to find the “damaged” tissue in order to change his pain. It allowed him to focus on all of the different aspects of his nervous system sensitization in order to recover.

 

As our sessions continued, one day Tom was excited to tell me – “ I was playing with my new remote control car for about 35 minutes yesterday, and I felt absolutely no pain the entire time. As soon as I put the car away, my pain came back.” Listening to Tom, I thought to myself, what a fantastic opportunity to teach Tom about neuronal circuitry and synaptic connections. I explained to him that in trying to figure out how to use his new remote control car, he was forcing his brain to create new synaptic connections, rather than allow the typical neuronal circuitry that resulted in pain, dominate.   Perhaps Norman Doidge (author of “The Brain’s Way of Healing”) said it best, “Neurons that fire together, wire together.” Over the past two years, Tom had worked so hard at strengthening the neuronal pathways that were responsible for producing his pain. The slightest bit on input, whether it be sitting for even a minute had become enough to fire the whole alarm system and result in pain.

 

I also showed Tom the somatosensory homunculus (a physical representation of how parts of the body are organized in the brain) to help him understand that his foot pain was really an extension of his pelvic pain. It is easy to see when looking at an illustration of the homunculus that the genitals and feet are adjacent to each other. As the synaptic connections strengthen in this area, it only makes sense that they hijack neighboring areas. This made complete sense to Tom. Of course his brain had become “smudged” with the growing and sprouting synaptic connections that had only strengthened over his two-year history of persistent pelvic pain. They had now caused his foot pain too. Tom was really starting to get this.

 

I am still seeing Tom on a weekly basis, as I have only been working with him for about 6 weeks at this time. He reports his pain is 50% better. It will take more time for the necessary plastic changes to “un-wire” within his central nervous system, but I am optimistic and hopeful for Tom’s future. The biggest obstacle for Tom was in appreciating that physical changes had occurred within his central nervous system, and that this was the main reason for all of his pain. Once he understood how this unhelpful wiring could be reversed, his symptoms drastically improved.

 

What I think was particularly effective in making these changes in a system that went unchanged for two years despite loads of treatment to the tissues was my ability to use Tom’s pain experiences to teach Tom about his pain system. Tailoring neurophysiologically-based pain education to the individual, certainly can deliver more meaningful lessons. Tom’s “readiness to change” with regard to his beliefs about his pain system also played a significant role in seeing his symptoms quickly improve. Tom had seen a number of excellent clinicians who provided him with the very best manual therapies and modalities. The fact that overall, he was in worse condition than when he started all of these tissue-based treatments, helped him to realize that his pain was not primarily a tissue issue.

 

And for those of you wondering about Tom’s pudendal nerve mobility, in assessing all branches on a few different occasions, no reproduction of symptoms was ever produced.

 

Written by Lauren Campbell

Lauren Campbell
Assistant Instructor

 

References

Doidge, N. (2015). The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity. Viking Publishing.

Moseley, G. L. (2003b). Joining forces – combining cognition-targeted motor control training with group or individual pain physiology education: A successful treatment for chronic low back pain. Journal of Manual and Manipulative Therapeutics, 11, 88-94.

Moseley, G.L., Gallager, L, McAuley, J. (2013). A randomized-controlled trial of using a book of metaphors to reconceptualize pain and decrease catastrophizing in people with chronic pain. The Clinical Journal of Pain, 29(1): 20-25.