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.
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.
* 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.
* 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.
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. In fact, some of the are worse and now have more issues. We must remember to correlate symptoms and history with the radiologic findings. The issue in this case is that the patient reports that when she says she has pain wiht sitting and only has 10 minutes with a healthcare professional, they also tend to think it is a pudendal issue. Could the symptoms actually not relate to the pudendal nerves? Absolutely.
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?
(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.