The 5 Things We Wish You Knew About Pudendal Neuralgia

The 5 Things We Wish PTs, MDs, and Patients Knew About Pudendal Neuralgia and Pudendal Nerve Entrapment

Tracy Sher, MPT, CSCS and Loretta J. Robertson, PT, MS

Why is the diagnosis of Pudendal Neuralgia confused with Pudendal Nerve Entrapment? Why are there so many misdiagnoses with pudendal symptoms? Its complex. We are both pelvic physical therapists who see primarily pelvic pain, and more specifically, a high volume of patients with pudendal nerve symptoms. We evaluate and treat patients from all over the world who are not finding help or differential diagnoses related to pelvic pain and pudendal neuralgia. We also developed a full course for health professionals on pudendal neuralgia. What is most surprising to us is how many health care practitioners are not familiar with the diagnosis and treatment of pelvic pain and associated neuropathy in that area. We hear comments such as, “I don’t treat THAT nerve issue” or “I stay away from the pelvic region, but I’ll treat patients for back, hip or lower extremity diagnoses”. One vascular surgeon said, “I’ll deal with veins anywhere else in the body, but I won’t go near the pelvis.” Many patients seek answers online and this can lead to receiving the wrong information or seeing daunting “gloom and doom” stories. Research in this area is lacking, unfortunately. Here’s a list of the 5 things we wish everyone knew:

1. Pain with sitting does NOT mean you have Pudendal Neuralgia

   Many things can be the source of increased pain with sitting. These include vulvodynia, hip labral tears, proximal hamstring injuries with ischial bursitis, lumbar pathology, proximal hip adductor injuries, anal fissures, and pilonidal sinus just to name just a few. Often, the most basic question of exactly WHERE does it hurt with sitting is missed. An example: A 59 year-old male, traveling from out of state, presented to pelvic PT with the chief complaint of  “penis pain” he’s had for 14 years. He also said he had pain with sitting. He’s gone to the best medical centers all over the U.S. He’s had pudendal nerve decompression surgery, numerous other procedures such as pudenda nerve blocks, pulsed radiofrequency ablation, and cryoablation to the pudendal nerves. He’s had many different types of imaging tests – pelvic MRI and spine MRI. He’s tried all sorts of medications. Nothing helped with his discomfort, or if it has, it was fleeting for a few days. Every place he went, they tried their best treatment for what was considered a “pudendal issue.” Based on his symptoms, it was good to know he found professionals who even knew about the pudendal nerve and types of treatments. This is not always the case. But, in this case, this was likely the wrong path for treatment. (Read more about this case here). The pain was actually in the suprapubic area near the base of his penis and the lower abdominal region, and his pain only increased with sitting on a soft surface and was better with hard surfaces. This is a case of treating the wrong nerves and condition. (Here’s another case based on symptoms of pain with sitting, but the wrong diagnosis based on MRI) A diagnosis of Pudendal Neuralgia truly involves a complete review of the patient history, diagnostic testing (if indicated) and a thorough exam. It doesn’t matter how many times a web search indicates pudendal neuralgia involves pain with sitting (or the Nantes Criteria indicates this), it does not mean you have PN if you have pain with sitting. Furthermore, pudendal neuralgia is not just one thing – it can show up as a variety of symptoms, depending on the branch affected.

2. Pudendal Neuralgia DOES NOT MEAN Pudendal Nerve Entrapment 

They are not the same thing. MOST people do NOT have entrapment. The information on the internet is full of mistakes regarding this delineation, and there’s a big difference. Pudendal Neuralgia (PN) refers to pain along the distribution of the nerve – the pudendal nerve has 3 primary branches that go toward the anus, the perineum, and the clitoris or penis. Pudendal neuralgia does not mean that the nerve is damaged or trapped. There are many reasons for this neuralgia – a local nerve irritation from inflammation, tight muscles/connective tissue, vascular compression, mechanical compression (i.e. sitting for too long in a position with too much pressure), etc. Neuralgias are not always present and the intensity may change for a person. Pudendal Nerve Entrapment (PNE) will also have symptoms of Pudendal Neuralgia, but in this case the nerve is “trapped” and patients describe the pain as unrelenting and not necessarily modified with any changes in position, but maybe just worse with sitting. These patients have often tried numerous conservative treatments without any change in symptoms at all. Some specific cases are clear for PN Entrapment (PNE) and these patients can usually be identified early in the diagnostic process. This is specifically true for nerve symptoms associated with a surgery such as a hysterectomy or organ prolapse in which there can be an injury at the time of surgery with sutures, staples, and mesh or changes after surgery with mesh erosion or adhesions associated with hemorrhages. If someone wakes up from surgery with new-onset pudendal symptoms, this is a red flag.  Other PNE causes: major injury with pelvic trauma; and sometimes it is a congenital anatomical issue in which the sacrotuberous and sacrospinous ligaments cross too tightly and “trap” the nerve. Even if a patient has a “positive MRI for nerve entrapment,” it does not necessarily mean this is actually the case or that they have to have surgery (see #3).  The majority of patients can be managed with conservative measures and do not require surgery. There’s not a single diagnostic test that can accurately diagnose pudendal nerve entrapment. Here’s a good article on PN or PNE by our colleagues.

3. MRI findings are not/should not be the determining factor in deciding on surgery.

We do not have normative data on MRI’s for the pelvis or Pudendal Neuralgia.  Many of us probably have scar tissue in our pelvis that does not cause symptoms. Without knowing what normal is, we cannot determine if someone needs surgery based solely on what is found on the MRI.  We have often seen an MRI positive for scar tissue around the pudendal nerve on one side, but the patient’s symptoms were on the opposite side. We also see patients who have had 3 different MRIs from the “best” pudendal neuralgia MRI experts and received 3 different types of findings. MRIs CAN BE useful for ruling out other major issues such as a mass/tumor occupying space around the nerves.

4. Patients can often receive excellent treatment locally with conservative care 

You don’t necessarily have to rush off to a pudendal surgeon right away for care. There are pelvic pain centers now that offer multimodal treatments that include conservative care involving one or many of these: pelvic physical therapy, medicines, injections, counseling/CBT, support with daily life challenges and much more. Or, one may have to find individual practitioners in their respective areas that can meet these needs. We suggest patients become their own advocates and look for medical providers who have experience with pelvic pain management – it may not be right in your neighborhood, but seek out the right care. But, there are cases when you may need to find others with more experience. Check out the PelvicGuru.Com Directory!

5. “Failed Conservative Treatment”, Does NOT Necessarily Mean the Only Option is Surgery.

Not all treatments or clinicians are the same when it comes to many diagnoses, particularly pudendal neuralgia. We often hear patients comparing treatments with each other or sharing their experiences. Each individual has a unique case and blanket statements can create more issues than solutions. Some of the common misleading statements are:

• “Physical therapy doesn’t work.
• “That physical therapist does very aggressive treatment and I hurt for many days after. I guess I just have to take that pain”
• “You have to get an MRI and injections with only this doctor.”
• “I did acupuncture and it helped me, so everyone should do this”

Treatment for a diagnosis such as pudendal neuralgia (and pelvic pain in general) is difficult to find, but we encourage patients to keep trying to find the right care – not to give up! It is important to get the best education regarding treating this patient population. We, as clinicians, have to LEAD the way in understanding and teaching how pain and neuralgia works; and then incorporate this into a biopsychosocial model of treatment for individualized care. We must impart to patients that they shouldn’t assume PT or a physician’s care “doesn’t work” just because they or someone else had a bad experience. It may be worth finding another provider of care. Obviously, our mission is to make sure more healthcare providers are trained to provide the best patient experience with this type of diagnosis. There is hope!

6. ** Bonus – There isn’t an exact exercise protocol for pudendal neuralgia,

   …but there are some basic guidelines that are helpful. We look forward to sharing more about this topic and more in the future. Just remember that overall, movement is very important and exercise doesn’t cause nerve damage typically. We see patients fear movement (kineseophobia), which is not helpful at all for feeling better.  There are exercises that should likely be avoided. If these exercises seem to aggravate “pudendal” symptoms, stop them – even if your orthopedic PT says they help most patients: Any type of squat or “monster” walks with squatting and theraband tend to aggravate symptoms.  If you can complete exercises without discomfort during or after, you are NOT doing “damage”.
   

   Loretta J. Robertson (L)  and Tracy Sher (R)

   There are many more tips to share and we look forward to imparting more pudendal and pelvic pain wisdom.  Loretta J. Robertson, MS, PT and Tracy Sher, MPT, CSCS

   List of Pelvic Health Professionals -Updated 

   Loretta J. Robertson, PT, MS

   Loretta was a physical therapist who is a key part of Dr. Hibner’s (GYN and Pudendal surgeon) team in Phoenix, Arizona. She is now happily retired and living in Hawaii. She has long been regarded by patients and colleagues as a leading clinician in her field. She has more than 23 years of experience as a Physical Therapist specializing in Orthopedic and pelvic girdle dysfunction. In 1999, Loretta was recognized as a Board Certified Clinical Specialist in Orthopedics by the American Physical Therapy Association. Along with Dr. Michael Hibner, she has co-authored a paper on pudendal neuralgia and plans to continue this research collaboration in the coming years. She was a part time instructor in New York at Columbia University’s graduate P.T. program for 7 years.

   Tracy Sher, MPT, CSCS

   Tracy Sher, MPT, CSCS started working as an orthopedic and pelvic physical therapist in 2000. She currently owns her own private practice, Sher Pelvic Health and Healing in Orlando, FL. She sees patients locally as well as from out of state and country for a variety of pelvic/pelvic floor diagnoses, with a specialization in complex pelvic pain issues. Tracy is also the founder of this blog, Pelvic Guru. Tracy was on the Board Director for the International Pelvic Pain Society. Tracy has presented for the International Pelvic Pain Society and the Canadian Physiotherapy Association. She has also been a speaker at the APTA’s Combined Section Meeting and the Annual Conference. She regularly presented lectures to OB/GYN’s for Grand Rounds at Florida Hospital and GYN, Family Health and Colorectal Residents and Fellows, Urology- Prostate Surgery Teams and the Endometriosis Support Group. She started and managed a GYN Family Resident Pelvic PT observation program. She is currently completing her AASECT Sexuality Counseling Certification to complement her work. She received her Bachelor’s degree from Emory University in Atlanta, GA. She completed her Master of Physical Therapy degree at Northwestern University in Chicago, IL, where she also received an award for clinical excellence.  She is a member of the APTA SOWH, American Association of Sexuality Counselors, Educators and Therapists, the National Vulvodynia Association, the International Pelvic Pain Society, and contributes to Pudendal Neuralgia networks.

Are you interested in taking Tracy Sher’s Pudendal Neuralgia Self-Paced Online course? Find it HERE.