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The 5 Things We Wish You Knew About Pudendal Neuralgia

The Five Things We Wish You Knew about Pudendal Neuralgia with Tracy Sher

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

60 Comments

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

    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.

    • Randy on July 11, 2020 at 10:37 am

      What are your thoughts on pudendal nerve denervation. Are you familiar with Doctor Parekatil in Clermont Florida?

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

    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 on January 3, 2018 at 1:37 pm

      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

      • Randy on July 11, 2020 at 10:37 am

        What are your thoughts on pudendal nerve denervation. Are you familiar with Doctor Parekatil in Clermont Florida?

    • Damon Davis on May 12, 2020 at 2:24 pm

      I’ve had this symptom for awhile now when I sit both sides of my lower buttocks inflames feeling like my penis is being pulled in backwards my erections come and goes but I have no feelings on my RT side fir sensation I’ve had several I repeat several MRI’S had surgery in 2917 for a horrific herniated disc now my doctor say I have a Cyst in the middle of my back can’t even ejaculate properly if I bend down properly I still have lower back pain when this happens I have to either pee or poop every time but I’am taking tamsulosin which this is a alpha blocker but please help and share

  3. Nancy Mobley on January 3, 2018 at 12:12 pm

    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 on January 3, 2018 at 1:22 pm

      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 on January 4, 2018 at 9:39 am

    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

    • Patty on February 7, 2018 at 1:16 pm

      Meghan
      Email me at mayamom@yahoo.com

    • jon c on March 31, 2022 at 12:32 am

      hi I’m also in the boston area and dealing with similar issues as your son (i’m 26). did you find any good solutions?

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

    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 on January 31, 2018 at 10:43 pm

      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 on January 17, 2018 at 9:07 am

    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 on January 31, 2018 at 10:40 pm

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

    • Pretty on August 25, 2020 at 5:46 am

      Did it resolve?

    • Emily on January 11, 2021 at 8:02 pm

      Did you ever get an answer? This sounds a lot like how my pain started and it hasn’t let up. I’m 10 months in

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

    Hello,

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

    Thank you

    Julie

    • Tracy on January 31, 2018 at 10:40 pm

      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 on January 27, 2018 at 3:06 pm

    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 on January 31, 2018 at 10:35 pm

      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 on January 27, 2018 at 11:37 pm

    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 on January 31, 2018 at 10:34 pm

      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

      • Randy on July 12, 2020 at 4:51 am

        Emotional reaction to the chronic pain is one of the most important things I learned from physical therapy.

    • Fiona on June 2, 2019 at 1:10 pm

      Same here I have 2 TVT removals now I am in a lot of nerve pain. I need help.

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

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

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

    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?

    • Ted on February 28, 2019 at 11:50 am

      I had High Dose Rate Monotherapy for Prostate Cancer in 2007. Could either the radiation or the Template being stitched into my perineum caused pudendal nerve damage making me impotent

  12. Tammy on April 3, 2018 at 12:42 pm

    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?

    • mike on December 7, 2021 at 1:29 pm

      i have similar symptoms as a male, especially scrotal itching.. i suspect its my pudendal nerve too. have you found any answers

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

    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.

    • Eve. on August 7, 2019 at 11:43 am

      Hi Nicole,

      What you describe is just what I feel when I have a flare up. Back in 2013 I started having a few symptoms such as burning, the feeling of pressure, and just like you, the feeling of being arroused. I saw my ogyn but with no relieve. For an entire year I suffered and no doctor knew what it could be. I was prescribed all sorts of antibiotics. Finally I came across a forum where this women had similar issues. She saw a pelvis specialist and got better. I of course had to see this Dr. Marvel in Maryland. so I drove 5 hours and he diagnose me with Pudendal neuralgia. He prescribed this compound cream, steroid and clindamicin and wouldn’t you believe it, it all went away. Ofcouse I was told that I might have flare ups if the nerve gets inflamed due to too much stretching, prolonged sitting,(in this case I use this specific cushion for it) etc. I have had flare ups, but I lay down and relax take ibuprofen and back to my self. I hope you get relieve if you haven’t yet.

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

    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 on April 27, 2018 at 10:49 am

    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 on April 28, 2018 at 7:34 am

    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 on April 30, 2018 at 2:11 pm

    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 on May 12, 2018 at 12:01 pm

      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

  18. Elizabeth Weiler on May 29, 2018 at 11:51 pm

    Hi there,

    I’m struggling to determine what’s going on following a failed pessary fitting (pessary was in for about 25 min. max, that’s it). During that same week, I exercised vigorously (Bootcamp, with deep squats), and did far more cycling than is typical for me. Since then (21 days ago), I’ve struggled with what I though was an intense UTI with dramatic urethral urgency, which has abated but morphed into intense low back pain and a feeling of deep pressure in my perineum (it feels like a severe prolapse–or golfball between my perineum). I’m concerned that this may be a case of PNE, or a chronic issue. I have an appointment with a urogynecologist soon, and am wondering what could be going on and what next steps I should take. Thanks you so much for any feedback!

  19. michael on June 16, 2018 at 1:05 pm

    I have been experiencing pain in my rectal/coccyx area for years. Sometimes it is burning in my perineum and scrotum and sometimes just putting any pressure on my glutes it causes pain al over the area. Burning pain or sometimes it feels like I have a baseball in my rectum. Could this be PN. I have had injections to coccyx pelvic floor therapy and many meds but no doctor can seem to chase this down, Any thoughts?

  20. Michael Cavalieri on June 17, 2018 at 1:11 pm

    Hello, For the last month, I’ve lost nearly all the feeling in the areas innervated by the pudendal nerve on the right side. I have scrotal, anal, perrineum, penile, and inner thigh numbness. Its exacerbated by standing and sitting and it’s getting worse daily. I have pain in righ low back and hip. I spent 4 days at Barrow ER with no resolution. Don’t know where to turn. Anxiety is at full blast. Need help.

    • Terri on March 18, 2019 at 12:50 pm

      I see this post was nearly a year ago. Have you found out what is going on. I am a female with the same problem. I’ve researched Pudendal Neuralgia. It mostly talks about pain. I have no pain in that area, but am suffering right now with low back pain and horrible leg pain.

      Terri

  21. Lucas on March 18, 2019 at 1:34 pm

    Hello,

    I’m 28 years old and I’m experiencing a great deal of pelvic pain, which I’m convinced is Pudendal neuralgia. I’ve not yet been “diagnosed” with it. I’ve been doing pelvic floor PT for 2 years which hasn’t been effective. I’ve had botox injections with no help. I’m thinking the worse case scenario based on other health issues such as neck problems that render me dizzy/pain/faintish. I’m becoming very depressed about my future in terms of pain management and treatment, difficulty sitting and concentrating for work and relationships problems due to pain. I live in Montreal. Any suggestions on providers here that may be helpful? I’m desperate to find help as this is causing erectile dysfunction as well where I can barely get one. The stinging irritation doesn’t stop and it’s driving me insane.

    Thanks,

    • Ybxn on May 17, 2019 at 11:06 pm

      Lucas….please google Dr Kirk Andrew of Ottawa.

  22. JUSTIN FAMOLARI on March 27, 2019 at 6:47 pm

    Hi I am here in NYC and I’m trying to find the best doctor to help me with my pudendal neuralgia. I am currently in PT at NYU but I’ve been going for a month with not much improvement. I have also been going to accupuncture and massage. I get some temporary relief but the pain returns and is relentless. I am seeing a neurologist next week. Can you please tell me a good doctor here in Manhattan I can see, I am desperate for help.
    Thanks

  23. Melissa on March 30, 2019 at 10:49 pm

    I have IBS, avoid gluten and limit dairy, ovary pain… possible endometriosis… ??..had hemorrhoids and fistula in the past……about a month and a half ago I started to notice rectal and vaginal dryness and I am searching to try and figure out what is going on, I also have pain in my lower back that radiates down into the anal/rectal area, it certainly becomes more agitated when sitting for a long period of time…pain also between my legs during ovulation and menstruation, I try to blame it on hormone changes and my cycle.. I have already been to my OBGYN who did not seem concerned and told me to use a personal lubricant for comfort and I am trying to get in with my Gastro they are putting me off for a while.. I am going to try and get in with a colon/rectal specialist I saw many years ago after having my first son. It doesn’t seem like “dryness” is a symptom of this although others match up?

  24. Wendy on April 6, 2019 at 4:32 pm

    Please help
    need doctor near Wellington Florida

    • Joe on December 1, 2019 at 9:58 am

      Wendy, I live in the Dallas -Fort area and I can’t find a doctor who treats this condition.
      Good luck on your search for a doctor.

  25. Vicki on April 18, 2019 at 11:25 am

    Hello
    I had what felt like a bladder infection with burning during urination. Whiteout tests, I was diagnosed with a bladder infection. I was prescribed Nitrofurantoin. I still had burning during urination after treatment so I went in to get tested. All tests normal and no sign of infection. I took AZO for two days as prescribed and the burning stopped. I began to then develop tingling, skin sensitivity and pain in my feet and it became increasingly difficult to urinate at all. The pain moved up my legs and feels like it has now settled in my pelvic area and sacrum. I then was not able to urinate at all and have had to catheterize myself.
    I’ve had MRIs with and without contrast of my lumbar, cervical, thoracic regions and my brain. I’ve had a scope of my bladder, CT of the abdomen and pelvis, blood tests and lumbar puncture. Nothing has shown anything wrong or of concern.
    Luckily I have finally been able to urinate the last day and a half. It it’s uncomfortable. My urethra is very tender and I can feel it spasming. I’m still
    Feeling residual nerve issues in my left foot. My buttocks itches like crazy and I get stabbing/tingling sensations in my vulva, clitoris, anus.
    MDs seem to think I had a severe reaction to the antibiotics and that it’s just a waiting game for the nerves to heal. It’s been about 3 weeks since first onset of symptoms of when I had the burning urination. Never have had any issues like this before. No surgeries, Etc. or problems with urinating.
    Not even sure I originally even had a bladder infection at all as I was not tested. Wondering if PT specializing in pelvic floor would be helpful to see if my pudendal nerve is being irritated etc or if there is another issue.

    Thank you

  26. Abby on December 4, 2019 at 10:31 am

    I’ve been seeing a doctor at the Cleveland Clinic/Fairview Hospital (Ohio) for pelvic floor pain after trying pelvic floor PT with no success. Injections to the symphysis pubis nerve didn’t help, but so far the injections to the pudendal nerve have eliminated the pain. For over a year I’ve had to stop many activities because they aggravated the pain. It’s so nice to have my life back.

    • Randy on July 12, 2020 at 4:52 am

      exactly what type of injections are you getting and how long does the relief last before you need further injections? Thank you

    • Polly on August 14, 2020 at 11:31 am

      Abby, I am so happy for you. We’re these injections done using either CT Scan or MRI guidance? Thanks!

  27. juli james on July 20, 2020 at 5:59 pm

    Dr. Hibner is no longer with St. Joe’s here in Phoenix. Does anyone know where he has relocated?

    • Nevine Melikian on May 14, 2021 at 10:25 am

      Dr. Castellanos is Dr. Hibner’s partner. He’s still at the same office. He’s been my dr through this whole miserable journey. He was able to eliminate pudendal neuralgia and recently prescribed diazepam/baclefem suppositories (made at the pharmacy in the same building) for rectal spasms and pain. My pain and discomfort went for 8 to 2. Dr Castellanos is fantastic. Dr. Hibner May have retired.

  28. Tanisha on August 31, 2020 at 6:07 am

    I am hoping you can help me in the slightest. Please – about 2 years ago I was supposed to be getting my IUD replaced when the doctor got a tool stuck inside of me. Since the emergency surgery i have these convulsions or spasms. They generate from my vagina and go down my left thigh. Getting up, walking, taking a shower trying to wash front or back and even bending can be spasmatic. I can get frozen with spasms and simply have to wait for them to subside. I have not been diagnosed but my symptoms and areas effected have me believe that it has something to do with the pudendal nerve. I am over the max recommened dose of gabapentin and they just added baclofen which seems to only make me tired or feel exhausted. These spasms have made me use the bathroom on myself because it was that intense and I was frozen in the spasms. Is there any way you can please help me? Please!?

  29. Jean Twitty on November 18, 2020 at 10:48 pm

    Hello,
    I’m interested in dry needling for my puendal neuralgia. Any advice is appreciated. I am currently receiving PT and my therapist brought up the treatment but, she is not trained to do it.
    Thank you for your reply.

    • Paula Downs on September 30, 2021 at 11:57 pm

      This post is almost a year later because I just found this page, but dry needling has done more for my pudendal neuralgia and other issues than anything I have had done in 44 years. I have an exceptional PT which makes all the difference. Don’t let anyone touch you if they haven’t had training in the pelvic area. I always have my sessions with electrodes. Sometimes the pain is mild and tingly, other times I scream and sob but it always fixes whatever was out of whack in the nerves, muscles and brain/nerve connection. My legs are always stronger afterwards as well. It is worth it.

    • Paula Downs on November 21, 2021 at 10:04 pm

      Only find someone who is trained. It can be painful even if done correctly. I have also had pudendal nerve blocks and each time is different. First time, both sides, I was numb in my whole butt and pelvis for several days from too much anesthetic but it lasted for 5 months. The next 3 we’re not very effective. Everyone is different. Dry needling is a wonderful component to other modalities but insurance won’t pay for it in most cases. My PT does it out of kindness.

  30. patricia daruwala on August 8, 2021 at 7:00 am

    I am in the UK and was diagnosed with PNE at London pain clinic. ten years ago. I have had MRI then spinal and it showed 3 bulging discs- i was told nothing could be done for these but they were not cause of the symptoms i was presenting with.
    i was referred to neurologist and pelvic pain specialist. He diagnosed PNE and prescribed Pregablin. I have had many different
    meds over the years including morphine patches and all very limited usefullnss and at best just taking the edge off the pain.
    I have now gone to private clinic in London and being assessed for medical Cannabis. I am so frustrated and anxious from this
    long term pain. I would love if someone could let me know if they have found a specific cushion please as i cannot sit down – can only lie down.
    Thank you for any help you can give me

  31. Eileen Gallagher on August 18, 2021 at 4:54 pm

    I experienced prolonged inflammation from a major bout with lichen sclerosus and for months have been experiencing so that align with a diagnosis of prudential neuralgia. I also have scleroderma. Neither my rheumatologist, Gyn, or my PCP. Have been helpful. I am coping with the pelvic symptoms but am concerned that I’m experiencing some weakness in my legs and strange sensations in my feet. I am on gabapentin. Do you think prudential neuralgia can cause weakness on my legs?

  32. ANA on September 19, 2021 at 8:14 am

    Can you please advise how to differ pudental neuralgia or pudental nerve entrapment from slow onset cauda equina syndrme without having an MRI or CT? Due to having a Harrington rod spinal fusion Th4 – L2 26 years ago I cannot have an MRI and I had 3 MSCT already and I am terified of having to do it anymore.
    I even have 3 lumbar protrusions L3-S1.
    I started doing pilates excercises 3 weeks ago again after a 7 monts pause due to covid and a very high inactivity. Could I do something during excercises to entrap pudental nerve by a ligament as my discomfort started about then and got worse after latest workout 10 daxs ago?.i have an urge to urinate every time I stand up.

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