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 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, 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 soft surface and 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 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 a 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 patient’s 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.

 

 

 

It's usually not entrapment and that's a good thing

It’s usually not entrapment and that’s a good thing

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 a 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 

dorsal-nerve-of-the-clitoris (1)

Netter image for educational purposes

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.

Here’s a Directory of Pelvic Health Professionals. Check this out!

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!

  1. ** 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 to 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 thera-band tend to aggravate symptoms.  If you can complete exercises without discomfort during or after, you are NOT doing “damage”.

    Tracy Sher and Loretta J. Robertson

    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.

26 Comments

  1. Nadine December 5, 2017 at 2:51 pm - Reply

    Could pudendal nerve damage be caused by fissurectomy/fissurotomy surgery? The day of my surgery began a pain that feels deep in my right glute that has me in extraordinary pain.

  2. Michele Karst. December 13, 2017 at 7:19 am - Reply

    Hi I am hopping you will reply to me. I am wondering do women with neuralgia/perineal pain use any form of locally applied warm compress? ‘Do you have such a thing? If so, what material would be used for this?
    Thanking You.
    Michele Karst.
    Midwife, Mackay Australia.

    • Tracy Sher January 3, 2018 at 1:37 pm - Reply

      Michele,
      A warm compress can be helpful for some patients. However, some people find cold compresses/ice helpful instead. It is really an individual situation – both heat and cold can be helpful for neuralgia type of pain. However, if the symptoms seem worse with the warm compress, it is likely not the best option. There are some great products by pelvic health solutions. https://pelvicpainsolutions.com/collections/all

  3. Nancy Mobley January 3, 2018 at 12:12 pm - Reply

    I had a coccxgectomy at John’s Hopkins in 2006 for coccyxdenia which left me I horrific pain which was diagnosed there in 2007 as PNE. I was also diagnosed with PNE by the late C.Paul Perry in Birmingham AL. I had a nerve decompression in Phoenix which did not help and was left with a dropped left foot. I had a MRN done that confirms the serious nerve damage. ? II have had cryotherapy at Emory and even a colostomy to try to help with increased pain after BM. I am in horrific pain all the time and pain meds only take edge off, but without them, I would be unable to stand it. I am 76 and pain has even worsened. 24/7.
    Please help me. I feel desparate.

    • Tracy Sher January 3, 2018 at 1:22 pm - Reply

      Nancy,
      I’m sorry you are dealing with all of this! What large city are you near? It sounds like it would benefit you to work with a pelvic physical therapist or orthopedic physical therapist who understands treating and managing pain. Maybe we can help you connect with someone.

  4. Meghan Willis January 4, 2018 at 9:39 am - Reply

    Hi,
    My 28 year old son is experiencing a great deal of pelvic pain, which he is convinced is Pudendal neuralgia. However, he has not yet been “diagnosed” with it. He has been getting pelvic floor PT which hasn’t been effective and has had two injections- also not effective. He tends to think worse case scenario based on other health issues- celiac and joint problems- and is very depressed about his future in terms of pain management, difficulty sitting for work and relationships due to pain. We live in the Boston area. Any suggestions on providers here that may be helpful? Thanks so much!
    Meghan

  5. Ann G January 11, 2018 at 10:08 am - Reply

    Good Morning,
    I am a healthcare professional that has unfortunately become a patient. After experiencing sudden pelvic pain early in 2017, I got out of my car only to discover my cervix hanging out where it did not belong. After failing intensive Kegel with ” the kegel queen”, failing pessary and the problem worsening, I sought out the best surgeon I could find. I developed an inflammatory reaction to the vicryl which has not been fun, but manageable with steroids. My greatest concern is the right sided pudendal nerve pain ( I highly suspect) since I got off the table. It literally felt like I had been kicked by a donkey in my coccyx with no specific point yenderness. It is 16 days out and I sit on my left buttocks, am numb with now transient knifing pain. I am scheduled to return to work in 12 days and am concerned. When should I start inquiring about an MRI and I’m expecting neuralgia because of inflammation, but do not want to risk missing entrapment. You will be glad to know, before I went into surgery, I started to train my women with mild pelvic floor dysfunction the importance of proper pelvic floor exercise.

    • Tracy January 31, 2018 at 10:43 pm - Reply

      Hi Ann,
      I’m sorry you are dealing with all of this! Did you have a hysterectomy? If you have pudendal like pain after a surgical procedure, it is generally recommended to go back to the surgeon to see if something needs to be addressed. Also, what large city are you near? There may be pelvic pain specialists in your area.

  6. june January 17, 2018 at 9:07 am - Reply

    Hello,

    Coud I enquire if either; 1. Prolonged clitoris masturbation with vibrator, 2. Squats with weights, could cause pudendal neurlagia. Over a period of two days I engaged in both activities and now I am suffering from altered sensation in my vulva and pubis mondis just above clitoris. I am very very scared.
    Thank you

    • Tracy January 31, 2018 at 10:40 pm - Reply

      Please see other response. I hope it is resolving for you!

  7. Julie January 20, 2018 at 6:45 am - Reply

    Hello,

    Can pudendal nerve damage be caused by clitoral vibrator use or doing deep squares with weights.

    Thank you

    Julie

    • Tracy January 31, 2018 at 10:40 pm - Reply

      Here’s the good news. The pudendal nerve can get “zinged” and irritated by vibrators (and maybe squats), but those typically don’t cause long-term damage. The best solution is to stop using the vibrator for a bit (or much less aggressively) and decrease squats to see if the symptoms change. Then, you can slowly go back to activities as long as your symptoms don’t seem to return. That’s the general information.

  8. Teresa January 27, 2018 at 3:06 pm - Reply

    I have pudendal pain that seems like a urinary tract pain at timea. I have had pudendal nerve blocks at mayo clinic. They help for a while. But I am desperate for a solution.

    • Tracy January 31, 2018 at 10:35 pm - Reply

      Here’s the tricky part – the pudendal nerve is simply one nerve out of many in that area. This may be why there’s some relief but it isn’t the full picture. Are you able to work with a pelvic physical therapist or other pelvic pain specialists who can do a full review /assessment of the whole pelvic region, spine, bladder, etc.?

  9. Lyndsey January 27, 2018 at 11:37 pm - Reply

    It has been over a year since you posted this article but I wanted to thank you for your comprehensive explanation. I have suffered with Pudendal, illoinguinal, and genitofemoral neuralgia since the placement of transvaginal mesh. Much of the mesh has been removed but the pain is onoing. Personally I gave up on PT because the relief was very short but your discussion had encouraged me to try again. I also appreciate your recommendations to seek out additional providers; even those outside your immediate location. I have done this and it has been of great benefit.

    • Tracy January 31, 2018 at 10:34 pm - Reply

      Lyndsey,
      Thank you very much for sharing this comment! We really hope to share information so that people all over the world can access the best health. We know it is not always easy and your words are great to see! Tracy

  10. Patty February 7, 2018 at 1:21 pm - Reply

    5 years of rectal pain and counting. Endless treatment pelvic floor PT. Pain never ends. Any thoughts?

  11. Mary March 17, 2018 at 8:37 am - Reply

    Can a pudendal nerve be injured by a poorly placed buttock injection? Could this also cause damage to pelvic floor muscles? Could it also cause an inability to feel the urge to urinate?

  12. Tammy April 3, 2018 at 12:42 pm - Reply

    I have sitting pain that seems to be where sit bones are and clitorial pain and intense itch. I also have off and on vaginal pain. This has been going on for many years and was originally diagnosed as I.C. Have started pelvic floor therapy and they say I have very tight pelvic floor muscles, but unsure if pudendal nerve is involved. I have also light urine leakage and burning after I urinate. I’m so depressed because of chronic pain and have spent all my retirement trying to get correct treatment. I am just hoping to get some pain relief to enable me to continue working. What do you advise?

  13. Nicole April 4, 2018 at 2:37 pm - Reply

    I have a bit of a different issue, but I’m convinced it also involves this Nerve. I have a very uncomfortable feeling in my clitoris (kind of like being arroused) but without any sexual thoughts or situation. It becomes very uncomfortable and is not eased with an orgasm, which actually makes it worse. I also get swelling in all other vaginal/anal areas. I’ve tried distraction, walking, everything I can think of. I have this uncomfortable ache Dow there all day. I’ve been told it may be that the nerve is trapped, but I have no painful symptoms.

  14. salim April 20, 2018 at 7:42 pm - Reply

    i have burning in my pelvis along with penile burning and hurting. Gets worse at nights and wose after i get up sleeping on my back. It is least painful while walking and standing. When i sit, it feels i am sitting on a wound. My penis hurts on touch. I feel so frustrated. First they thought it waa my rectum and prostrate but negative. I have 4 pinched nerves in my lumbar spine and some degenerative discs. I feel its a nerve issue in my pelvis or lower back and that nerve possibly connects my penis. Please advise.

  15. Larissa April 27, 2018 at 10:49 am - Reply

    Now 29, I have experienced urethral pain since shortly after I first started masturbating around age 13. I used to squirt clear liquid with clitoral masturbation, but I was never sure if I was orgasming, ejaculating, or if I was really just leaking urine. After clitoral touching, I would get urethral pain that would sometimes go away after a few days, but then it just stayed chronically. It still generally gets worse if I touch my clitoris. Of the many doctors and physical therapists I’ve seen, none ever seemed to understand the clitoral/urethral connection I spoke of and it seemed like they ignored it to focus on various treatments for vulvodynia and ic. Only recently did I read that both the urethra and clitoris are connected to the pudendal nerve. Do my clitoral and urethral issues sound like they could be related to the pudendal nerve or are there other nerve pathways that could be causing this pain?

  16. Steve Cain April 28, 2018 at 7:34 am - Reply

    Hi,
    My 28 year old son is experiencing a great deal of pelvic pain, which he is convinced is Pudendal neuralgia. However, he has not yet been “diagnosed” with it. He has been getting pelvic floor PT which hasn’t been effective and has had two injections- also not effective. He tends to think worse case scenario based on other health issues- celiac and joint problems- and is very depressed about his future in terms of pain management, difficulty sitting for work and relationships due to pain. We live in the Boston area. Any suggestions on providers here that may be helpful? Thanks so much!

    This describes our 26 year old son to a T. He recently moved to San Diego and seems to be spiraling into depression as he can’t deal with his condition-who can you recommend in the San Diego area? Thanks Steve

  17. Jennifer Swafford April 30, 2018 at 2:11 pm - Reply

    I am dealing with aggressive right side pudental nerve pain after my doctor has left my area and I can’t seem to find another doctor that is knowledgeable in my area. I live near Tulsa Oklahoma and am wondering if you know of a doctor near me. Thank you for the information.

    • Tracy May 12, 2018 at 12:01 pm - Reply

      Hi,
      I’m sorry we don’t know of someone close to you. I would recommend checking out the http://www.pelvicpain.org website to see if there’s someone in your area (or even in a closer radius). I’ll also ask our group of colleagues around the world and see if anyone knows.
      Tracy

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