I'll never forget the words of a former patient of mine, who happens to be a Radiologist.  He said "MRIs  can be MR  LIES. Sometimes you can't see things and other times there are false positives "  This is seen  with all sorts of cases of low back pain, for example.  Low back pain is such a common problem and radiologic findings don't always correlate with symptoms .  We know that even if herniated discs or degenerative changes are found on an  MRI, it doesn't mean that it relates to patient symptoms.(2014 MRI  study)      ( Scans  For Back Pain Ineffective) .  I once heard an example that elucidates this point. Someone can have migraine headaches and also have baldness, a "degenerative" change.  But, this does not mean the baldness is causing the headache. If someone has findings of degenerative discs, this does not mean it is the cause of the back pain. The opposite can also happen where important  things are not  seen  and  reported  as well  (Harvard researchers found that 83 percent of radiologists didn't notice the gorilla  in a lung scan).  Also, some results of  MRIs  differ  depending on who's reading  them.  This can be based on experience, knowledge of history,  training  in a specialty area,  potential for  financial gain and so forth. 

I recently saw a patient for an evaluation and a follow-up visit. Her case truly  concerned me. She supports me sharing the initial findings to promote awareness and education.  The  MRI  report  looks potentially daunting (particularly if one does a Google search about it) and  the diagnosis  appears to be incorrect. This  could likely lead to a totally different  path of care than the patient needs , as we unfortunately see far too often with pelvic health  issues.  When evaluating patients, my  goal is to  ensure I get a  complete  patient history,  relevant  physical exam based on my  knowledge and licensure, and  utilize  critical  thinking skills to move forward with a plan of care.  With regard to pelvic pain,  there aren't always  enough  specialists  in this area for patients to see.  As a result,  I often become a primary source for  triage  and case management to ensure patients  are connected with resources and a full team of other medical professionals, if needed.   This is one of those cases where the patient stated  "Had I  not seen you first, I was so desperate, I would have  paid any money to do  a surgery that would have probably been the wrong choice."  I share this  case  to highlight  the importance  of  not  relying on just one test or measure, which may be skewed; and encouraging patients to advocate for themselves and their loved ones.  It is  perfectly acceptable  to  get  several  opinions/evaluations from  qualified  professionals.  

Patient  Evaluation
Based on a 2 hour evaluation  with  extensive  clinical history of symptoms  and onset and  extensive physical exam. 
47  year-old woman  who came  from out of state after  multiple attempts to seek help in her area.  Based  on her symptoms,  she was very concerned that she had pudendal  nerve entrapment after researching on the internet. While waiting to see me in my office, she was sitting  in a special anti-gravity chair  she brought with her and was reclined back.  She reports  she is so miserable with sitting that she can't even drive  her kids  around  town to  activities or work much.  She works  in a reclined position , alternating with standing. Walking and lifting heavy things can also aggravate the symptoms. She has seen numerous  physicians in her area and they have suggested things like  "it seems like a nerve - here's medicine for that" or " just  don't sit up as much,"  or  offering pudendal injections.  But, she has felt hopeless.

Important  history:       
* Patient  had an abdominoplasty (tummy tuck) surgery about 8 months prior to these symptoms happening AND had also started doing intense kickboxing and abdominal crunch exercises.  
* She  had  an oopherectomy (removal of an ovary)  after these symptoms started, as  one GYN  thought this may decrease her pain due to a large cyst on that ovary.  She felt only minor relief, but then the pain returned. 
* History of 2 vaginal births. 

Primary symptoms:  
*  Not able to tolerate sitting upright  at all  (Most  of her  physicians didn't ask for more information)
Important: If she sits up straight, she feels  like she has a "toothache " in  the  lower abdominal/pubic area.  She also feels a distinct  vulvar /clitoral/ and urethral discomfort. As long as she leans back,  the symptoms decrease. If she lies flat, the symptoms usually go away.  Sitting on a toilet seat relieves this pressure too. 

*  With walking ,  the patient  felt some lower  abdominal/pubic pressure  and sometimes gets  the  sharp "fork" pain in her vagina. 
*  Symptoms  increase  when she lifts  things  like a jug of milk. 
* Symptoms worse by the end of the day. 

MR  findings:    
Bilateral (both sides) PUDENDAL  NERVE  ENTRAPMENT  at the area of the piriformis  (located  in the buttock region). 

* The patient has absolutely no  signs or symptoms  of issues  at or near the piriformis on  either side and she doesn't even have symptoms classic of pudendal nerve entrapment. Furthermore, we cannot be sure it is true entrapment just based on this test. The  danger with  this diagnosis, is it may lead  someone down the path of thinking they need some sort of pudendal nerve decompression surgery and/or both of the piriformis muscles resected.  I've seen too many people get these types of surgeries when it is just  NOT the  right treatment at all.   Pain with  sitting does not  have to mean  pudendal neuralgia or entrapment.

Clinical Evaluation - Highlights
Negative for  all cystoscopy,  other urology tests, and spinal MRI.  Negative for abdominal/transvaginal  ultrasound other than  cyst on ovary (and  removal of that ovary  since symptoms started). 

** Absolutely  no pain or reproduction of symptoms with any touch, testing, pressure at the piriformis or surrounding hip or  posterior external pelvic muscles.  No pain or reproduction of symptoms with palpation at ischial tuberosities,  external obturator internus, or along pubic ramus. 
** Able  to reproduce  the  deep "fork" pain in the vagina with direct pressure  into the umbilicus (belly button).  Appears to have  superficial diastasis recti of 1 finger at umbilicus and slighly below (but deeper part is intact)
**  Mild tenderness  and "toothache" feeling with pressure /palpation  at  lower abdomen   and along her scar.  Symptom  reproduction and increased  abdominal  pain with sitting  hours after palpation at abdomen.
*  Mild pelvic organ prolapse - bladder and rectum  (I -II). Not significant. GYN  exam  performed recently indicated the same (I-II).  
*  Some  mild tenderness  of deep internal pelvic floor muscles  (levator ani,  obturator internus)  and near paraurethral/sphincter urethrae area;  and  no tenderness at  bulbocavernosus/ischiocavernosus. Not able to reproduce the deep vaginal pain, sitting pain, or clitoral/urethral/vulvar with palpation at pelvic floor muscles, at cervix (though tender to touch)  or  near ischial spine, alcock's canal, or  deep sacral region B. 
*  Tenderness  directly at/near the clitoris  and near the external urethral meatus that patient reports  feels like the "urethral" discomfort when she sits. This appears to be separate  from the other pain and may  be  a local  tissue  issue  (not primary source of pain).
* Negative  for general  thoracic, lumbar, sacral  musculoskeletal/neural testing. 
* Cutaneous sensation at the abdomen  appears  intact (reports still having sensation at scar - possibly slightly diminished) and no  allodynia or  hyperalgesia. 
*  Long history of urinary frequency and nocturia ; and  urinary leakage with jumping  (prior  to  new onset of symptoms).  History of constipation , but improved now, which seems to help some with her symptoms. 

The evaluation reveals  that the area of most discomfort and also reproduction of symptoms  is at the abdomen, not  at sacrum or  piriformis. She likely has difficulty sitting  due to compressing the abdomen. 
She is likely having nerve irritation  at/near the abdominal/pubic/inguinal region . She likely has adhesions (scar tissue from the surgery) - may or may not be contributory;  She may have some lymphedema (vascular compoent) at the abdomen/inguinal regions; It is possible she may have had  some form of osteitis pubis  due to excessive abdominal crunches and kicking  without proper support or activation of the transversus abdominus.    I'm keeping prolapse and possible enterocele in the diffrentials just in case. There's also a sensitive area to the touch at/near the clitoris that we can easily address as well.  We will continue to see if  conservative management is effective.  We will begin  the treatment plan and  reassess.  

BIG  Difference  Between  MR  Report and  Symptoms /Clinical Findings!
This patient was considering  pudendal surgery on both sides .  Doesn't look like the right diagnosis, right?

Important Pudendal Information: :  
(For more details, please view  the article,  The 5  Things  We  Wish You  Knew About Pudendal  Neuralgia) 
*  There is not one single diagnostic test that can reliably  diagnose pudendal  nerve entrapment.   
*  The clinical history and location of the symptoms  are very important. 
*    It is  NOT pudendal nerve  entrapment  OR  pudendal neuralgia  just because one has pain with sitting and improves when  sitting on a toilet.  (You cannot rely on the vague symptom lists on the internet or Nantes  criteria). 
*  Pudendal Neuralgia (pain along the nerve distribution)  is NOT Pudendal Nerve Entrapment  (may  have  neuralgia,  but  in this case the nerve is  actually "trapped"  - due   to a surgery , trauma in that exact area, etc. MOST people are NOT entrapped). 
*  There are other nerves  that can mimic some of the same  symptoms of pudendal neuralgia.

Some final thoughts: 
1. Don't  decide to have a  major surgery based on  just  MRI or other radiology findings alone.  
2. Make sure you get  a few opinions, if possible.  This is particularly true if the  same person who reads the MRI  is  going to perform the surgery.
3. Go to  specialists  who actually specialize in THE issue.  I have some wonderful  Urology, GYN, and Colorectal  physician colleagues  who admit they  are  happy  to help patients, but just don't have the training for complex pelvic pain.  Even if  someone  has a website claiming to treat pelvic pain and pudendal issues , make sure you investigate this  further; and still possibly get another  medical opinion.  I  never  mind if patients seek other  opinions . 
4. Try  the best conservative measures first  such as pelvic  physical therapy.  Make sure it is someone who  treats and understands pelvic pain. Not just incontinence and weakness. 

A 59 year-old male, traveling from out of state, presented here to SPHH with the chief complaint of  "penis pain" he's had for 14 years. 

He's already seen physicians at the top  medical centers all over the U.S. He's had pudendal nerve decompression surgery (...because he was told "MAYBE" he had pudendal nerve entrapment. This is NOT the same as pudendal neuralgia; and surgery is a last resort IF the right differentials and treatments are tried), numerous other procedures such as pudenda nerve blocks, pulsed radio frequency 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 treat for what was considered a "pudendal issue." Based on his symptoms, I was glad to know he found professionals who even knew about the pudendal nerve and types of treatments. This is not always the case. Often, patients go for years hearing "I deal with the back and hips, not  that  region" or "It must just be in your head, stop worrying about it so much" and so forth. The issue in his case is that it appears that not all of the differentials were properly considered or assessed. THIS is the key. 

When I completed a long, detailed patient history discussion and listened to his story, I realized this is a patient who has been possibly misdiagnosed. The pain is at the pubic region and  base of his penis. He also doesn't like to eat meals during the day because his lower abdomen feels "bloated" and his pain gets worse. He appeared to have an umbilical hernia (at the belly button).  When I pressed on it, that seemed to  reproduce some of his  penile pain.  I could decrease his pain by closing the gap at his  belly button  AND if I lifted his  abdomen  up  or  put a lot of pressure  in an upward direction on his  sit bone area  and perineum.  Typically,  patients with pudendal neuralgia  feel worse with compression  or any type of pressure with sitting. He feels better sitting on a very hard surface and worse on  soft surfaces.  He's also had previous inguinal hernia surgery.

Since our initial visit , he's had a  minor surgery to correct the umbilical hernia and already had relief of some of the symptoms. I placed him on an exercise program to facilitate  improved movement,  better breathing, and  activating  the  "core" muscles in  a way that was supportive vs. too much lower abdominal pressure.  He's also started  a pelvic floor strengthening and coordination program  (usually this is not recommend  with pudendal issues). 

Any guesses what the  likely  correct diagnosis is for this patient?  I helped the patient find the right healthcare professionals for a "virtual team" and we are continuing  treatment  and care  for what appears to be some form of an   ilioinguinal, iliohypogastric and /or genitofemoral  neuralgia or entrapment (and ruling out an enterocele and/or vascular components).  Stay tuned for updates! 

All of the usual treatments  for pudendal nerve, even the  conservative pelvic physical therapy treatments  are not optimal. In fact,  he  does better  with a program for  strengthening and coordinating  better control of  "core" muscles and engaging the pelvic floor and glutes.  

**  This is merely one case. Just remember that each and every case is so different and the  assessment and plan must be individualized. I find that so often  people go online and see similar symptoms  and run out and have  unnecessary procedures. Find someone who  understands  this. Most  physicians, nurses, and physical therapists do not get specialized training in pelvic neuralgias and pelvic pain .  ~ Tracy Sher, MPT, CSCS

Tracy Sher, MPT, CSCS and Loretta J. Robertson , MS , PT  teach  a  pudendal neuralgia and differential pelvic pain course for MDs and Physical Therapists  internationally. The  next courses are in Salt Lake City , April 18/19, 2015 and Orlando May 30/31, 2015.

Check out  our article : The 5 Things We Wish You Knew About Pudendal Neuralgia.