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.

  1. 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

  2. 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.

  1. 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 (see the list of resources here and #5).

    International Pelvic Pain Society (List of Physicians and PTs Internationally Who Treat Pelvic Pain/Pudendal)

    Section on Women’s Health of APTA (Pelvic PTs in US)

    Herman and Wallace Pelvic Rehab Institute (Pelvic PTs in the US)

    Pudendal Hope Website (List of Physicians, Pelvic PTs and others across the world. Submitted by patients too).

    Pudendal Neuralgia Association (Non-Profit Organization to help patients and families)

(We will list more of these centers and program in the future)

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

    Our next course pudendal course for pelvic physical therapists and other health professionals is:

    pudendal tracy loretta

    List of Pelvic Health Professionals -Updated 

    Loretta J. Robertson, PT, MS

    Loretta is a physical therapist who is a key part of Dr. Hibner’s (GYN and Pudendal surgeon) team in Phoenix, Arizona. 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 is a 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.

210 thoughts on “The 5 Things We Wish You Knew About Pudendal Neuralgia

  1. Hey Tracy, so excited to have you teach this course in Orlando on May 30 th, but I don’t see a way to register at H&W. Is the course through another source?

    • Hi Melissa! Thanks for your interest. We are actually hosting a smaller course ourselves. We should have a link up in the next 2-4 weeks once we get the CEUs approved. The place and date are set. 🙂 We will add it here and post it as well.

  2. Hi, I have a question for you. I have taken many Herman and Wallace courses. I’ve been developing our pelvic rehab program over the last several years. AND, I love your website / blog – I love and so appreciate that you assimilate and share all of this valuable information.
    Are you aware of any courses where we can do dissection or at least study already dissected cadavers? This part of the anatomy was completely skipped over in our anatomy (almost 30 years ago…) when I went to PT school. Thanks!
    Natalie, PT in Santa Barbara

    • Great question, Natalie! I know of two potential opportunities for this to happen in 2016 (maybe one in 2015). It is very expensive and time-consuming to set up. Once I have confirmed these opportunities, I’m happy to share the information. If anyone else knows of these courses, please share. Natalie – you can email pelvicguru1@gmail.com to inquire again as well. Thanks for that question!! Great job with all that you are doing.

  3. these are all so true, as a young woman living a full, exciting, and normal life with PN, I can say that my PT and support from informed drs made all the difference. I was convinced I had PNE for a long time, but now have mostly pain free days, we know that isn’t the case. It can be a LONG journey to getting the pain to a managed state, but one that is so worth it!

  4. Many women who have been injured by pelvic/transvaginal mesh implants end up with pudendal nerve pain. It is really important that they consider pelvic physical therapy, and we encourage all of the members of our support group to do so. Thanks for a fantastic article. And for anyone looking for more information about surgical mesh complications, please join our open public Facebook group, Mesh Problems. Also, follow us on Twitter @Mesh_Problems

  5. I had a mesh bladder sling implanted in 2010. I was 40 years old, married with 4 great kids, and a fitness buff who ran, biked, rollerbladed daily. Waking up from the mesh surgery, I had immediate severe one-sided vulvar pain. Within a month, that was joined by achy, heavy, throbbing all-over vaginal pain. And then, shortly after, the sharp knife-like pain of mesh eroding through my urethra and vagina.

    I had the mesh fully removed, which resolved all of the knife-like erosion pain. However, I was left with the aching vaginal pain (which turned out to be my pelvic muscles in spasm) and the one-sided vulvar pain (which turned out to be pudendal nerve pain and a vulvar neuroma.) Pelvic Physical Therapy was a godsend – it literally saved me.

    Many months of PT finally got my pelvic muscles to relax, and with that came full relief from the heavy, achy, throbbing vaginal pain. And my physical therapist worked with my pain management doc to diagnose the neuroma and pudendal nerve pain that remained. I had the neuroma surgically removed, and much of that pain subsided.

    5 years later, I still have the one-sided vulvar pain – although not as strong as before. I still cannot sit at all, other than 15 minutes on a padded toilet seat when absolutely necessary. I’ve also now developed Pelvic Congestion Syndrome (I’m told because of the 7 total pelvic surgeries I’ve had because of the mesh), and one of the varicose veins presses on the pudendal nerve pain area. So I have a ways to go.

    But I would highly recommend Pelvic PT to anyone who has pelvic pain from mesh complications. It helped me remove layer after layer of pain, and got me to a point where the pain is tolerable and I can have a life again.

    Thanks for a great article!

  6. Thank you Tracy and Loretta! I am a woman with chronic deep infiltrating endometriosis. I also advocate for women with endometriosis. Two blogs, the World Endometriosis Research Foundation and the Endometriosis Research Center are a valuable resource for networking, sharing, support and education. Then retired RN group moderator of the US based Endo Research Center shares peer reviewed scientific articles on endometriosis, which I have found invaluable.

    I also have pelvic and extra pelvic adhesions. I have found that when I am constipated, the bowel can pull on structures near or those adhered to. This can cause pudendal nerve pain as well as pain from the pelvic floor to the cranium. It can be resolved with conservative measures addressing the bowel, ie, MiraLax, Colace, high fiber consumption several times daily (carrots and almonds work well too) as well as analgesia of several varieties. I also have been intensely working with a very experienced pelvic physical therapist. She checks my pelvic floor at every visit. I can Kegel and reverse Kegel well. My pelvic floor relaxes well. I have had trial injections of lidocaine and steroid through he gluteal muscle under imaging by a interventional radiologist. The vulva was numb for minutes but other than that, I did not get a positive response. Therefore, I am not a good candidate for Botox injections into the pelvic floor as it is relaxed. My pain seems to come from my adhesions which occur both from surgical procedures as well as the pelvic endometriosis.

    Fortunately, I have an outstanding treatment team involving a physiatrist, vulvar specialist, advanced GYN surgeon, pelvic physical therapist and PCP.

    Thank you again for your blog. Many men and women have no knowledge of this issue!

  7. As a provider, witness and advocate of pain syndromes, I see the missing pieces to the therapy puzzle.
    1. The pelvic floor is connected to the anterior abdominal wall the lower spine, glutes and thigh muscles. For therapy to be complete and thorough all these areas should be decompressed with therapy.

    2. There are some definitions that need to be clarified so that one will have a better image and comprehension of what pain is, where pain is, how to find pain and how to effectively treat pain. You can only find this pain with a 2 way dialogue between the patient and the provider. NO interference with technology.

    3. There are some keywords that I do not see in this article which will affect the clinical outcomes of people in long-term pain and dysfunction; acupuncture varieties, myofascial, trigger points, myofascial release, dry needling, wet needling, spray and stretch, spinal adjustments, osteopathic therapy and magnesium. These are all safe and effective treatment for pain. Did you know that pain, acupuncture and therapy is not what it used to be and think it is? This overwhelmingly adds to all the poor clinical outcomes related to pain.

    4. Modern holistic is not the age old holistic where the goal is to restore the patient to a satisfactory state of well-being. To accomplish this the therapy should be focused on the whole person, their whole life and their entire environment.

    5. In modern times, you will be hard pressed to find a person let alone a team to tackle long-term pain. Cost, dogma, resources, insurance coverages, egos are in the way.

    If you need clarification-please ask??

  8. Pingback: Pudendal Neuralgia – There is Hope! | Pelvic Guru

  9. I read your entire post & I’m very curious of your professional opinion. I just shared my husbands pain & US & CT results with my PT who I’ve seen for many issues that a Dr or traditional PT can’t understand nor treat. She loved you site & after sharing my husbands results she feel that he has signs of PNE but her & her partner have release techniques to relieve the nerve & their patients pain goes away.

    My husband long story short, flipped a jet ski in the ocean in Oct 2001 he was taken to a hospital in Aruba and they did X-Rays that showed L4 & L5 were crunched from the accident. When we returned home to Michigan, he had chiropratic care on & off for 1-2 years. He would get some relief, but over the years get severe pain In those areas & finally he hates taking the time & spending the $$ on chiropratic that he bought a inversion table for the house. He throws his back about 1-2 times a year & when he does hard labor, he has to use the table to release the pressure on the nerves or L4/L5 however one would say it.

    His x-Rays from 2013 show severe arthritis from the chiroprator that were taken after he threw his back out from turning the wrong way, which was a first.

    September 2014 he started having pain in what he described to be behind his right testicle.
    He had a vesectomy that failed in 2008 but never had it re-done.

    I finally got him to go back to his urologist to start w him for his current pain.
    He had an US & CT that showed a severely enlarged & bulging vein behind the epedidemis & several Epedidimal cyst in the epedidimis & 4 tiny hepatic cyst in the liver. They ran blood work to see if his liver or hormones are altered to see if there’s any connection.

    Friday we were sent to another dr who specializes in pelvic pain & vasectomy reversals.

    The first thing he asked Matt was is the pain when your sitting & worse when sitting on a hard object such as bench or ski lift & that’s exactly what his pain feels like it from & when.
    He said none of the cyst are a concern to him & he wants us to see a nerve/neurologist dr.

    He had 1 patient in his career complain of what they thought was testicle pain & the patient ended up having PNE. He was sent to a dr in Texas & had the surgey & was fine after that.

    He doesn’t know if my husband has that, but I told him about his accident in 2001 & his constant lower back pain over the years, he connected some dots.

    This dr said for us to research PNE this weekend & he will get us into the best dr in Mi from consulting w his partners. Because his only patient he has seen this on went to Texas, he doesn’t personally know who to send us to yet.

    He said the dr in France invented the name & the surgery for PNE & he has studied 5 dr’s since in other states, Texas was one.

    I would love to hear your thoughts & perspective on what you think we should do from here.

    We are VERY open to your kind of work & from reading about your practice & work, I feel like you are similar to our PT here.

    I appreciate any info you can share because we don’t want to make the wrong choice & he does not want to be on a pain medication or any medication for the rest of his life, nor does he want surgery.

    Thanks in advance

  10. Are you aware of any providers who are located in the Philadelphia area who treat men? Have suffered terribly for about 8 years and been unsuccessfully treated by uros and GP for chronic prostatitis with various antibiotics despite lack of evidence of bacteria and couldn’t tolerate NSAIDs. Classic symptoms of excruciating perineal pain when sitting lead me to believe it is pudendal neuralgia or nerve entrapment. I believe guided needle injections may help, but am having difficulty finding a qualified provider.

  11. I have had PN for a few years and have yet to find a PT in the Seattle area who might be able to help me or provide some excercises or stretches I can do on a daily basis to help ease the pain. Any tips?

    I will say, in my case, the vast majority in f the pain is managed or avoided by using a standing desk and a set of two hardware/gardening store kneeling pads to rest each buttock on when I must sit (on the airplane, during meetings, etc.). For those of you out there starting to learn to deal with this issue, do not give up hope. Be creative with your solutions, as each of our bodies are different in some ways. For me, it has taken adaptation and changes in habits. There are still some bad days, but 95% if the days are good!

    • If I could stand all day my pain would be minimal. I sadly have bad arthritis in both feet. I can barely sit to eat and even laying down is extremely painful. I’ve lived this way five years and wonder if it is really living.

  12. Differential diagnosis is very important. I had all the symptoms of neuralgia and /or Pudendal Nerve entrapment. Multisystem work up showed spinal stenosis with cord entrapment at the second to third lumbar veryebrae. L 2-3 laminotomy cured the perineal and buttock pain. Kittens on around it and or entrapment are very rare diagnoses and you need careful and patient selection before doing such a radical surgery.

    • Please help
      I was told by a home health head supervisor that I pudendal nerve entrapment following a left hip replacement as a result of avascular necrosis and having to have labrum
      Removed
      That was 3 years ago I was 49 then I had already gone 2 years prior with hip
      Joint pain
      I live in Virginia and I’m on disability
      I have literally been passed from dr to dr
      With everyone saying I don’t mess with pudendal nerve. I have also had it confirmed by Duke that when I lift my left leg the hip prothesis is hitting and pinching the iliopsoas tendon
      I’m on several pain meds
      I’m unable to sit without pain
      Ride in car or stand without pain in between my legs traveling behind my left leg to my left foot
      My husband and I don’t know what to do now..I am suffering in level 8-10 psin daily I’m barely eating or sleeping
      ease help..I want my life back
      Lost in pain-
      Julie

      • I know how you feel. I’m lost in pain. Don’t eat. I weight 87lbs and my usual weight is 120lbs. I can’t bear this much longer. I’m suicidal and no one will give me enough pain medicine. I am 53 and this has been going on for 2 1/2 years. I don’t know how much I can take. I went to a pudendal specialist who gave me one injection which helped for about 5 hours, am scheduled for another in a couple of days but am so discouraged after reading people aren’t helped much with these injections. It is so costly and I’m on disability too I just lay around with my legs spread and ice between them. I saw an OT who seemed to help me but my symptoms spread to my perineum instead of just my clitoris. I am afraid. Sorry I wasn’t much help. I want my life back too. I won’t go to HOliday events or go anywhere cuz I’m too miserable!
        Stacey Thompson

  13. Multidisciplinary work ups are essential to get the right diagnosis. I was evaluated by an outstanding physiatrist and spinal surgeon who found spinal compression at L2-3 which causes perineal and gluteal pain which has been resolved surgically. Otherwise I would’ve gone to see Dr. Kenneth Peters, MD in Detroit, Michigan for a Boot Camp workup With their multidisciplinary team of all specialist to find the specific cause. Before any drastic surgery would be considered, A specific diagnosis needs to be found. You cannot find a diagnosis for pudendal neuralgia entrapment without looking at all the other systems first because it’s a diagnosis of last resort.

  14. I wanted to share my story in case it might help others. My doctor told me to start taking Prilosec OTC in November 2006 daily. By February 2007 I developed the most awful burning/itching/aching sensations all through my genital region, but didn’t connect it with the Prilosec. Saw several doctors, but no one had any answers. After 8 1/2 years, I finally discovered through researching that proton pump inhibitors prevent proper magnesium absorption in the gut and magnesium is critical for proper muscle, nerve, bone, heart functions. By then I had also developed cardiac arrhythmia and tendonitis in numerous places. I quit the Prilosec cold turkey and started magnesium supplements. There was a noticeable decrease in pain within a few days and almost total relief in less than a month. After 5 months, I tried leaving off the magnesium, but the pain returned within a week. I started back with the magnesium and the pain went away again. Magnesium also relieved the tendonitis in my lower back and it feels like the ruptured disc has healed itself. I’m still hoping the arrhythmia will stop after time. I used magnesium citrate orally and epsom salt and magnesium chloride crystals topically. Hope this helps somebody out there!

    • I was on Prilosec for 15 years! I have been off for 3 years now but have since developed PNE. I also have hart rhythm issues and tendon issues as well. I will try the magnesium and see what happens.
      Thank you for your post and hopefully some help.

  15. I have been diagnosed with pelvic floor dysfunction. It started with a bacterial infection. Started Physio 4 months after pain in testical started. At times it was on left then right. Then both. Ice helped at first. Then heat. After I started Physio things started to improve. Things felt great. Then had sexy with wife and pain started again. After more Physio psin went away. Now pain is there more then not. Physio does not seem as effective. Urology doctor said to take Tylenol and flow max. Nothing helps. Tried otc muscle relaxents. But no relief. Penis and testical so feel like going to explode. Pt thinks now that nerve is problem causing muscles to be tight. Trying to see urologist. I think the pt is maybe on to something. Everything is on left side. Not sure which nerve it is but it is one of the 3 ( I believe I saw 3 in the picture of male public floor).

    I am lost Lmk. Tony

    • I often find that the dorsal aspect of the Pudendal nerve gets irritated due to decreased circulation or decreased movement at/near prostate. This can happen from inflammation, muscle tightness and more. Don’t give up on looking, but understand that most Urologist receive very little training in this type of pain. Your PT is on the right track.

  16. I am so close to just giving up on everything. Was on a hormonal birth control that thickened the lining of my uterus. Had to get off of the birth control. Worst period of my life happened. Followed by constipation for about 5 days. Took laxative and was fine. Then a pain started. I am not sure if it was the hormones or the period (i may have endometriosis but I don’t know), or the constipation. Whatever it was I have been in pain ever since. For a while i thought i have had vulvodynia (for 9 months) but suddenly a few days ago I felt a sharp pain which almost felt like my muscle was strained or pulled. The muscle in my leg now the left side of my vulva hurts awfully bad. Long story short. I can’t do this. I had to quit school and my job because of the pain and move back in with my parents. My fiance and I are falling apart. I am considering botox as I know my pelvic floor is tight from physical therapists. If it works and lessens the pressure on the nerve can it heal completely and go back to normal? I really need to know if the nerve can heal or not. Just so I can settle with this reality in my head. I have awful constipation and urinary frequency and occasional continence. My clitoris works alright and isn’t numb yet but I feel lessened pressure than before. Since I had no awful trauma or direct damage could it all just go back to normal and heal? Is that even a possibility?

    • Sorry you are dealing with this. You can absolutely get better. The tough part is that is is likely involving several different things. First, I always share that patients need to get Bowel movements healthy again. Then, you may have pelvic floor spasms, but there other treatments to try before going right to Botox. Pelvic PT with muscle relaxers is just one example. Also, if symptoms drastically changed after hormone changes, it would be very important to meet with someone who is a GYn that specializes in this – hormones, endometriosis I, etc. not all GYNs are the same. I wish you good health. Where do you live so we can connect you to someone?

      • Thank you so much for the quick response. I live in Virginia Beach, Virginia. Could anything that I have even cause pudendal neuralgia? I am so scared about nerve damage. I have taken several hormone tests and everything seems to be fine. Now I have what I would call actual nerve pains so I don’t think it is hormonal. A question that I can’t seem to get answered from the internet is what’s the difference between pelvic floor dysfunction and pudendal neuralgia? Don’t they both cause pain to that nerve? I feel as if they are almost the same thing. Also (Sorry about all the questions!!!) can this cause excess discharge, irregular periods, and vaginal swelling. I have had every single type of infection tested and have a normal ph. My labia has been swollen 3 times during the last 9 months. I can’t get my constipation better. I have tried everything there is. Magnesium, dietary changes, more fiber, less fiber, laxatives. I have had to do four enemas so far. But my pain does get worse after bms. Thank you!

      • There’s so much help for you. I’m not able to diagnose or give specific medical advice online… But, almost always it is not nerve damage. Pudendal neuralgia is just pain in the area of the Pudendal nerve. It’s the same as saying “headache” because there can be many causes. I don’t know of any specialists off the tip of my head in your area… Will have to look. Or you can look up international pelvic pain society for a list of providers. There’s a lot of hope… May be a combo of hormonal changes, swelling, leading to to nerve irritation (not damage)

  17. Loretta,
    Stephanie Pendergast and Dianna Fassett were instrumental in helping me get a diagnosis not assumption that PNE was responsible. We deserve multidisciplinary work ups not surgeons who rely on their PT exams.

  18. Hi Tracy and everyone in the blog. Does anyone know of a doctor that treats pudendal neuropathy in Miami, FL? I will be seeing a pelvic therapist next week.

  19. I think i have a pudendal nerve problem. What is the first step to get diagnosed. What doctor do I see. I live in Florida and need help. Thanks

  20. I have been reading your blog and think I may have PN or PNE. Is there a doctor or someone I could see in the San Diego area??
    In Dec of 2013 I had a hemi-laminectomy on l-4. It was about 2-3 months that the symptoms started….very slowly. I almost thought I was imagining it. But it got worse as time went on.
    I had a lumbar fusion (l5, s1) 5 months ago in hopes that my miserable pain would be helped. So far the pain has not gone away.
    PelvicGuru has given me hope that there may be an answer to all the pain and burning I am experiencing.
    Can’t sit or lay down. Im taking Tramadol, Cymbalta 20mg/day and Ibuprophen and Xanax. I ice and use heat.
    I know what others mean by “having no life”.
    Thanks for listening!

    • Lillian – thanks for reaching out! I’d highly recommend the pelvic PT therapists at comprehensive physical therapy. http://www.comprehensivetherapy.com/

      Several of the PTs have taken my Pudendal course and are also very knowledgable about the spine. They can evaluate you and can recommend the right physicians too if you need more of a team. If call and see if you can see them directly first. Ask for a therapist who is the best with spine and Pudendal issues. The owner, Cindy Furey, is great but I’m not sure if she is still seeing new patients.

  21. I have been bedridden with p.n. for 2 years. My muscles are becoming atrophy and weak. I’m only 63. I went to a p.t. and at 2nd visit she disappointed me greatly. Are there any exercises I can do to give back muscle strength. Any advice greatly appreciated

    • I am sorry you had a bad experience at PT and that you are in bed because of your P.N. The most important piece of advice I can give you is that movment – any amount of movement you can do without a significant increase in pain- is going to help you. There’s still so much hope. There are numerous exercises you can do in bed that can help with movement and some gentle strengthening. I am posting a video link. It is for bed rest in pregnancy, but some exercises can help with PN as well. My advice is to try 1-2 exercises a day at first to see if you can do these without increasing pain. Instead of sitting at the edge of the bed, you can try standing or stay lying down. If any exercise hurts to much, either do a smaller motion or don’t do that exercise. Remember to breathe. There are many more exercises that can be individualized. This is just a general video for ideas. https://www.youtube.com/watch?v=ATghaJHAuyE

      • I am 63 years old. I was misdiagnosed with two dental nerve entrapment. After consultation with an expert pelvic physical therapist and a urologist specializing in pelvic P, my physiatry rest did it work up and found out that I had L 2–3 spinal cord entrapment plus a fractured sacrum. Laminotomy at L2 three relieved almost all symptoms and the remainder are healing what time and with specific pelvic PT exercises seeing my expert pelvic physical therapist weekly.

      • Thank you as I said I was disappointed with the p.t. I went to so I will probably have to try another which is hell because it’s a 2 hour drive both ways and sitting in a car is like sitting with a knife in my vagina.

  22. Traci,
    Please revise your website. I am sure you know Dr Hibner and Loretta are no longer associated. Is she not retired and doing classes only while living in Hawaii?

    • I am teaching courses with Loretta, Drs. Hibner, and Castellanos in Phoenix in 2 weeks; and then we are teaching in Hawaii. Loretta is still teaching with me but no longer working as a PT in Phoenix. Yes…I’ll need to update that part. Thanks. 😉

  23. Terri – I hope you have found a PT that has a specialty in pelvic floor issues. It will be worth the drive – just be careful because pain makes us “dumb”. I identified the pudental nerve by internet search; for over four months the best the specialists could offer was they were “perplexed” about my debilitating pain after a routine kidney stone procedure. By second PT appointment, pain was reduced about 25%, I could walk more than a few feet, and hope was restored; recovery is a snail pace but the feeling of a knife is now manageable. The nerve causes sympathetic leg cramps; I started walking through the muscle pain each morning which helps even though some days I walk really slowly. I also do the floor exercises prescribed by the PT and my internist monitors meds for nerve pain.
    I’ll be 75 in a few months and hope to be in Spain in October. Hope you have something to look forward to as well

    • Thank you so much for your response. I am scheduled for a botox injection vaginally in the operating room with nerve block Friday and then I may try again to try a PT. Pretty overwhelmed at this point. Just so much has gone on in the last three years with little help with the pain. The PT I went to was supposed to specialize in pelvic floor issues but I soon discovered she was not. Back to square one.

  24. Hai , i am just diagnosed with PN and it is not curtain i have damage or pressure\ entrapment on the nerve.It is very good to read feedback and kritisism over all the so cold cures and visions.I am much more informed now,and have less hope but realistic hope.
    I red a lot about it; before i found some one who had knowloge about it.It is a expert PT and for once i had a normale conversation about the signs and the pain.Other dokters only questenised my signs my behavoir or at last (for the max) wanted tot talk about my perception of the problemen and the pain and acceptation.I know perception does a lot; its like the boedishtic tale about ;hit with the first arrow “the biologic pain” and than hit with the second arrow how you deal with the pain.Meditation and ankering my breath helps me a lot and keep moving with my nordic walking stiks .Not losing myself in selfpittying and desperadering hoe ever somethimes i am gliding in tot it .Changing my ideas about what a furfilling life is ,a good parent or a good wife because of my inmobility is also compassined tot my self .Its a thin line how you can carry the pain the best ;and a every day strugle.With the PT i am going to find out of there is hope for me i dont know of thats manupulation for musles or fiber , pulsed pf ,botox or otherwise.My uroloog who is thinking of CI is giving me neurostimulation for the bladder disfunction maby that can calm my nerve.How -ever wish me luck and strengh tot carry the burden and find soms release.For others hoe suffer i wish you flexibility and creativity and strenght to make life beter with pain while its during and hope there will be salvation.For my new Guru keep up the good work! tell the word! spread it out in espesialy conservitive mail chovinist dokterland.
    Thanks from me from my matras in Holland

  25. Pingback: I Wish I Knew What I Do Now | Drowkiller1

  26. 65 year old male – 3rd episode of pelvic pain; 2008, 2011 & Aug 2015 to current.

    For most recent episode, when to PT who performed biofeedback & e-stim. After 10 sessions, urination frequency & burning resolved (for the most part); however couldn’t get rid of sitting on a golf ball feeling (hard surface more comfortable than soft surface). Also, during the treatment regimen began to develop rectal/anal pain on the right side.

    Do I still have what is considered perineal pain? Do I need more PT? I don’t want any more biofeedback or e-stim; was very discouraged with methods.

    Any advice is appreciated.

    • Pelvic PTs who specialize and are very knowledgable in pelvic pain and your symptoms typically don’t do biofeedback and estim for this. Find a pelvic PT who specializes in pelvic pain. They can help you.

    • Can you explain why I feel less discomfort sitting on a hard surface vs. a soft chair/couch?

      Also, I’ve taken your advice and am going to a PT who does no biofeedback or e-stim.

      • Sometimes a hard surface provides more support for the pelvic region which feels better. Each person is so different and glad you are seeing someone to help you individually.

  27. I have abdominal pelvic pain for years. A lot of test and money spent on no answer. It is chronic , I live with it daily😞 I do not like taking pills so I live with it . No one can seem to give me an answer? Also fight with reoccurring BV, yeast and UTI infections. I sometimes think I am crazy and think they all think I am nuts cause nothing is ever found. I cry at times. The pain can go into my butt cheek and down my leg as well. Sitting in a car for long lengths seems to aggravate it as well. I am at wits end really. After I pee I have a burning sensation inside me an ache? Not like a UTI burning this is inside of me? Sometimes during sex I feel like a nerve is being hit? Have to change positions? Then sometimes after, not all the time my abdominal/ pelvic pain is bad? So any suggestions on this would be great. Also all my pain radiates on left side. Thank you

    • You do not have a diagnosis. Get a boot camp multidisciplinary work up from a center like Beaumont Univ in Detroit or Cleveland Clinic.

      See a good pelvic PT. They will also know good diagnostic centers.

      Do not go straight to a center for advanced GYN treatment of pelvic pain. They operate first, not as a last resort.

      I’ve been there!

  28. Hello Pelvic Guru,

    Can excessive (2-3 times a day) pelvic thrusting during sex cause Pudendal nerve issues?

    I did have a psa, dre and std test and all came back normal or negative.

    • It may actually cause irritation of the nerves at the spine/sacrum or general inflammatory changes at/near the nerve. If that was the cause of the issues, it should calm back down. You may just have to go easy on the thrusting for a little while 😉

      • I I have been there and done that. I was advised to undergo a pudendal nerve release procedure without even a vaginal exam by the surgeon. Please believe your pelvic PT they know what they’re doing and get a multidisciplinary evaluation by a an expert team if PT is not enough. Do not undergo surgery without getting a full evaluation.

  29. Thanks Judith and Pelvic Guru, I think my ab/pelvis muscles are a mess and need some rest. Will haggle with my primary to get a PT referral if it does not get better in a few months.

  30. I am a female and suspect I have pudendal nerve pain. I have chronic, constant shooting pain in my vulva/genital area. I have been searching on the internet for my symptoms and this seems to be what I am suffering from. This has been building for over 20 years and is now just unbearable. Can you please recommend someone who can help me in the Hollywood, Florida area. If not there then anywhere from Miami to Ft. Lauderdale. Thank you so much for your blog. It is giving me hope that there may be relief in my future.

    • Sorry you are dealing with this! There really is hope!! I’d highly recommend Beth Harris at Boca Regional (she had taken my PN course) or Pam Downey in Miami.

    • Hi Fran,

      Im from Miami and I am going through the same thing. Trying all conservative treatments hoping one will give me relief. I know it will be a long road but the good thing is treatable it is just a trial and error to see what works best for you. This is what keeps me going not going to lie I do have my moments of frustration which a good cry helps to resolve. 🙂 If you ever want to contact me to just talk let me know. best of luck. 🙂

    • Hey Fran,

      I am from the Miami area and going through the same thing. I am trying all conservative treatment until I can find something that really works for me. What keeps me going is that this is a treatable condition. It takes time and a lot of patience but you have to stay positive. Will not lie I do have those days that I get frustrated and a good cry makes you feel better. 🙂 If you ever need to talk let me know. good luck! 🙂

  31. Hello Pelvic Guru, I noticed my butt muscles are in the worst shape. If I do squats as an exercise they spasm and I get occasional spasms in legs and low back. Also if I lay on my back and lift my leg up or lay on my side and lift my leg up things get tight by my tailbone. Walking seems ok. I am not in actual pain but was wondering if there are any exercises you recommend for countering this to speed up the healing.

  32. Thanks, Judith.

    Pelvic Guru, is there anyone you know in San Diego or its surroundings areas such as Chula Vista, La Mesa or El Cajon?

    I am with Kaiser for now but I want to switch out in January.

      • Need a good source for multidisciplinary Endo eval. Have my expert pelvic PT Disna Fassett but adhesions getting aggressive again. Know any good Phoenix resources (excluding Dignity Health Ctr for Adv Pelvic Pain)? Need to have someone on board.

    • It will certainly depend on what clinic and professional you see. Many professionals around the country who treat pelvic pain and Pudendal issues see Medicare patients. Some do not .

  33. Looking for PT in Shreveport/Bossier City, Louisiana area specializing in assessing for pelvic floor dysfunction to start getting help.

  34. I have had vulvovaginal and clitoral pain from the nerve plexus in that area, it’s very important to never assume it’s just one cause. Mine was L2-3 spinal cord compression. Multidisciplinary evaluation is mandatory and see a good pelvic PT!

  35. I have suffered with what has been called pudendal neuralgia but have never had any tests or MRIs of the pelvis to prove it. I live in a very small rural town No disrespect intended but the doctors here or not very knowledgeable I have been to 15 years of doctors pelvic floor therapy, pain therapy psychological, hemorrhoid doctors and one gynecologist who specialized in putting mesh in women. I am approaching 70 years old and still full of life and then basically working through the pain by strength and trying to stay active but not too active as it has slowed me down quite a bit I’ve told the story so many times it makes me have more pain even to talk about it Can you help me find a Doctor Who can put me out of my misery he or are you the one that can do it for me I live in Bakersfield California close to Los Angeles. Your article indicated to me that this might be a pelvic situation I did have A fistulectomy in 2004 and yes the pain got worse and worse after that. I was also a medical transcriber for 46 years which included a lot of sitting This surgery was done at UCLA medical center. I feel like this is going to shorten my life if I don’t get some sort of answers or diagnosis or help and I don’t want that to happen so I am reaching out to you to see if you can give me a hand up!

  36. I think I may have this. The problem is that I don’t know how to tell if it’s a pudendal issue or just very tight pelvic muscles. I have numb almost genitals along with random pins and needles sensations.
    Is getting a pudendal nerve block the way to test?
    Which Muscles usually cause the compression or entrapment of the oudendal nerve?

    • Max – that’s the tricky part. You need a specialist who understands both muscles and nerves. It can be both (sort of like a chicken and egg issue)- it’s figuring out how to best calm them both down.

      • If it is caused by muscular tightness, what muscle(s) are tight and compressing it? The obteratur internus?

        If it isn’t cause by muscles, then what is going on that’s causing the nerve issue? Why would a nerve stay out of whack if there’s no muscle or ligament pushing into it?

  37. Hi. I have taken muscle relaxers nerve pain meds Lyrica. vaginal valuim, and lidocane placed on the valva .I also have had steroids shots inmy buttocks.I am still in PAIN My muscle spasams get so tight i fell like my pelvic bone is going to crack It is worst when I sit . Do you have any suggestions ? They have suggested Botox but Medicare and Medicaid do not cover this. Thanks

    • See a great pelvic PT and get a multidisciplinary workup. Chances are it is not PNE and only PN which your PT can help you manage. That was true for me. The PN blocks are specific for PN. My workup helped reveal deep infiltrating endometriosis in the RV wall and possibly recurrence in iliac arteries and uterosacral ligaments and possibly colon and bladder. In referral from my Phoenix Urogynecologist, I am seeing a multidisciplinary advanced laparoscopic women’s group Aug 3 in Phoenix at Banner University Wonen’s Clinic.

      • Phyllis they have mentioned Botox.The last Neurologist ,with no tests done is trying to blame all this on a medicine I took years ago for Bipolar and they call this problem tardive akathisia. My psychiatrist will not accept this diagnosis.The neurologist was trying to suggest initiation of a drug that my psychiatrist says causes the problem he diagnosis.So still suffering,going over 2yrs now.

      • If you get botox let me know the results. I feel I have the same symptoms like constant numbing and tingling on vulva labia and on my clitoris too.

      • Controlling spinal source of irritating the pudendal nerve plus learning how to massage away the pain, as taught by my pelvic PT, has been invaluable. Using diet to control adhesion pain, another cause of pudendal irritation, is necessary in pain management.

    • Hi Anonymous.How did they detect it was pudendal nerve damage.I can’t get them to tell me what is going on. Did they give you some kinda test. Thanks DeAnn

      • Yes – the information provided did not reveal much about the diagnosis or the type of help you seek. Please share more and where you are located.

      • I need to find someone for help .I live in Raleigh NC I’ve pain, muscle relaxers Vaginal valuim Lidocane on the Volva Mri done and nothing showed up I need to find where they do a test while I am sitting I am in so much pain in the pelvic to my bottom area I have been to 8 weeks of pelvic theraphy ,and that did not help I do pelvic exercises every day. The pain is so bad it feels like my pelvic bone is going to crack with the tightness of the muscle movement.

  38. Hello, Guru, I have watched this blog for a while and wish to help.

    As a board certified MD, with experiences all about CAMs, The AMA has set up all up to fail in based on actions in 1968. They allowed a few doctors to break natural laws of biology, criminal acts against humanity in medicine and health care; we all have been playing a crucial role in these harmful actions.‏

    I have a book draft that will help everyone “see” pain correctly.

    It has taken me 18 years to be able to uncover the exact set of reasons why our American health care systems have failed.

    Failed to ensure that every citizen is healthy, pain, and misery free with secured wellbeings.
    Failed to make sure that every citizen has access to efficient, effective, and restorative treatments for pain, misery, suffering, malfunctions, and dysfunctions.
    Failed to figure out how to address rampant waste, fraud, abuses, malpractices leading to criminal behaviors.
    Failed to remedy the original causes of our broken healthcare system by perpetrating a correction with Affordable Care Act.
    Failed to investigate thoroughly to uncover the criminal and sinister schemes, which are the root causes of our failed systems.
    Failed to look inward to self-investigate for the underlying causes of this catastrophe.

    The reasons are this simple:
    In the 1960s, a group of Doctors banded together and omitted a few laws of biology as to how the human body works to be able to perform:
    A knee replacement for knee pain.
    A craniotomy for headaches.
    A spinal fusion for lower back pain.

    Critical Factual Points:
    All of these surgical procedures to treat pain breach critical laws of nature.
    All of these Doctors broke the oath of Hippocrates, “to do no harm.”
    All of these Doctors broke an oath of Hippocrates, “to keep other physicians from doing harm.”
    All of these Doctors did not consult and overlooked the treatment for pain that was already in the historical archives of medicine.
    All of these doctors ignored the critical laws of nature as to how the human body works misinformed these patients and performed the wrong treatments for their pain.
    All these doctors overlooked and circumvented elementary anatomy, biology, scientific methodology and the pathology of diseases simply to prove that they could outthink and outperform nature’s ability to heal the human body naturally and automatically.
    All these doctors overlooked the perfection of natural healing.
    All these doctors ignored the simple cause-and-effect equation; “The treatments for pain in the body is physical therapy.”
    All these doctors ignored the historically grounded evidence in the archives of medicine that physical therapy is the treatment of choice for most all pain problems derived from the soft, subcutaneous, connective and muscular tissues.
    All these doctors overlooked the facts that for treatment to be effective that the modality must be applied by a Physician Master in a customized, personalized manner which matches the individual’s needs.
    All these doctors ignored the critical facts that physical therapy is the only treatment for muscular derived pain and dysfunctions.
    All these doctors overlooked the crucial facts that the human body requires a certain amount of physical therapy per day which will help restore muscles back to a ready state.
    All these doctors overlooked the critical fact that if muscles do not receive the daily requirement of physical therapy they will begin to fail to support the individual’s quality of life.
    These doctors overlook the critical fact that pain is NOT on a scale from 0 to 10.
    All these doctors ignored the crucial fact that pain is 100% personal, invisible, undetectable by technology, infinitely spread throughout the body and that the patient’s testimony is always primary evidence.
    All these doctors overlooked the facts that primary evidence is the most valuable which can never be marginalized, modified or negated.
    All these doctors in their attempt to outdo mother nature turned patients into numbers by the act of dehumanizing, de-individualizing, turning them into the flesh and blood without human emotions; these doctors turn people into cash cows.
    All of these doctors have overlooked the fact that miss-informed consent to perform treatments that are not beneficial and or does harm is criminal behaviors.
    All of these doctors ignore the fact that organize criminal behavior which does irreparable harm to people are crimes against humanity.
    All of these doctors have put their faith in the American Medical Association to secure and uphold the honor and integrity of the correct and accurate knowledge and thus of the instigators of crimes against humanity.

    Would you like to review a copy in draft and pdf format?

  39. Pudendal Hope has a list of surgeons who specialize in this problem. Depends where you live. They are located in many different parts of the city. I assume you had pelvic mesh surgery. If not be sure you see a pelvic PT and get a multidisciplinary evaluation. There is more than one thing that caused Pudendal nerve pain.

    • Hi. I went to Dr Aaron Filler in Santa Monica, California, which was on that Prudenal hope directory AND I had surgery for my PNE AND PE. He also did my sciatic nerve and my tailbone surgery. I went to Cedar-Sinai medical center for surgery on both of my buttock. It’s been three years now and am now worse than before my surgery. I am physically not able to sit, walk, bend, stand, etc… My pelvic is beyond tight and I have electric shocks in my entire pelvic area. You don’t know how much pain I now live with. The doctor said that I fell in the 5% that get worse after surgery.
      Yes!, I got worse and now I’m in my hometown Texas. I’ve done it all to get better. It all happen when I had pelvic floor restoration that my Prudenal nerve and other branch nerves flared up. First on the right and now on the left side. Now I’m bedridden and need assistance because I can’t do much now. Please do not do prolapse surgery and don’t do any nerve surgeries. I don’t want you to live with sever tightness in your entire pelvic area and live with electric shocks in your private parts that hurt. I’m not sure I can live with this chronic pain. I can only sleep on my left side only. So, so, hard. It’s my experience. Surgeries are not always successful. ❤️

      • Dear Angelica,

        Thanks you verry much for the warming i am so sorry that you have to carry thuis enormus burden .I have compassion and i wish you strenght to carry the pain.I only know the pain for a few jours a week and it is already a big challenger to live with it.When i think i can no longer manage i think of a putting a neurostimulation disc in my back to catch of the circle of pain .I wish there comes a solution for you because holding on is a hell of a job hang on and keep surging for pain releaf in differend ways and let a samebodfy with nolege off pain help with coping with the pain methaly i wish you less pain ans thanks you for the warming that surgery is not the anwser

      • Sounds like I might have compressed nerbes according to habringers site i azonia. I dont think I would want to have the surgery. Some ladyvdied this week from it.

  40. In response to De Ann Boone I have the same issues. Since you sent her info for her pudendal issues I would appreciate the same courtesy. Have communicated several times with Pelvic Guru and recd no reply… I live in the LA area and would appreciate you referring me to some sort of physician who is qualified to talk to me and treat me possibly for my pudendal damaged nerve issue which Is so similar to miss De Ann Boone whom you referred to a physician.

    • Hi Sia! I’m so sorry you didn’t receive a response. Not intentional in any way. We have many excellent pelvic physical therapy contacts in the L.A. Area who treat Pudendal issues. The only physician I can think of is Dr. Andrea Rapkin at UCLA. The therapists who can help you are Stephanie Pendergast, Deena Goodman, Karen Brandon, Heather Jeffcoat, Jenni Gablesberg, Jackie Levitt.

      You can see who is in the best location for you. They can help you or provide info on other doctors in the area. I hope that helps!

  41. I hope all you lovely specialist are learning new helping ways x I hope that very soon mesh implants for rectopexy and bladder pop will be properly looked into for side effects. I had mine in 2008 followed by STARR . I have been poorly ever since. Numbness in legs Arms face tongue and server back pain requiring spinal pain injections. Loss of job . Sex life etc…. I have only just peiced together all my issues after my gp told me I had to many problems.
    More training for removal is needed. I hope you and your colleagues will take the time to look into these issues for us . We would be very grateful to resume a normal life.

  42. Hello, Do you have any recommendations of pelvic floor physical therapists in the Baltimore, Maryland area that are experienced in pn and will treat contributing orthopaedic issues? I have a great dr. Thank you.

  43. Where do I start? It started over 12 years ago. I became pregnant with twins. In my 6th month I started to get numbing and alittle tingling in my vagina/pelvic area. I saw a neurologist. He did several exams and he said I had mind neuropathy. He gave me some meds that made me see things. I called him and told him that meds is making me see things, so I felt. He said, wow! Well, he just gave me a mild pain Med. That’s it. Well, during and after pregnancy it continued. I was told that after pregnancy I would be ok. So, after pregnancy it kept getting worse. Soon after I noticed it was getting worse so I saw another doctor. Nothing!, no help! Finally I was told that maybe it’s my prolapse urterus. Well, I had a major surgery the same day I had a hysterectomy. When I woke up from that surgery, I screamed from pain. The pain was so chronic that I begged the nurse to stop the pain. I felt like I was in a sever car accident and my bones were broken. I couldn’t move. The pain alone put me to sleep (could handle the pain and pain knocked me out). That pain never went away. I told the doctor and he said that I need physical therapy. Well, I did the PT and just touching me was so hard for me. I went home and all I did was cry and cry. That doctor told me that with time it will go away. It never did. I was referred to a pain mgr and he did LSB with the target of getting a stimulator to stop the pain. I thought finally I would be out of pain. Was I wrong, that same pain mrg did the last Lumbar Systamatic Block (LSB), when I woke up from last procedure I woke up with the worse electric shocks in my vagina. I couldn’t move an inch without screaming from the top of my lungs. That doc didn’t do anything to help me. He wheel me out from the back so other patients don’t hear me. My nurse friend who was with me rushed me to best private hospital. The ER Doctor didn’t know what to do. They admitted me and did basic testings and MRI, you couldn’t understand why I was screaming like someone was killing me. Not ever pain meds helped me. After one week in hospital and giving me steroids the pain was hard but to them I had to go home. I went home with chronic pain and they said to see a pain mrg. Ya, right. I said never again! Again, the nerve flare up and electric shocks in my vagina made me scream each time I moved an inch. The sever pain for weeks was taking a toll of my body. I visited all of the private hospitals with no help. Finally, someone said to go to the county hospital. There’s professors there. I went screaming there. They almost didn’t take me in because I had private insurance, but because they took me in through the ambulance they took me in. After almost one day trying to see a doctor, other patients started to complain because I was screaming without stopping. By God grace, I was taken to a private room. Finally, a professor came in and after he was told what happened to me she took me in and all I remember that I was half asleep and I felt many shots on my sacrum area. I passed out after but I felt some relief. After that, I was told that I was asleep for many days. My pressure was very low that they told my family that I might dye. My pressure couldn’t rise to a fair pressure. It was near death. I was in that hospital for over one month. Once my pressure was out of danger, I still was hurting with those electric shots but it came down some but not enough. I was sent home. I was told that I was out for three months. I had to wear diapers and I was nursed 24 hours a day. Hospital sent me with 20 different pills, like steroids and pain meds. I don’t recall anything from the month at hospital after the steroid shots relief and the three months at home nursed by others. I almost die from taking too much pain meds because the pain was beyond explanation. I know what it feels like being electrocuted. It’s torture. I was tortured. After those 3 months of no memory, I still had those shocks. At one point with so much pain I almost committed suicided because I just couldn’t live with those shocks. I cried and begged God to take me. My faith was tested. Fast forward, years after they brought me home, I kept visiting the hospital almost 3-6 times monthly. No one could do anything for me. I was losing hope. Still, I prayed and asked help from my Lord. I knew that I had to persevere because of my mother, daughters and husband. That’s all that kept me desiring to live. It was so hard for them all. I thank God that as of today, my husband is still with me and he says he will never leave me. Did I mentioned that at my 8th month my Lord Jesus took my twin girls home? I was not upset. I know my God and He never does evil. He has perfect plans for all His children. Evil all this pain I’ve endured and still continue to endure living with this PNE and PE. Did I mention that the last LSB, when the doctor went through my spine and he touched my nerves pass where she should of gone, he blew up all of my nerves from my waist to my feet. I live with chronic sciatic nerve damage, sacrum nerves damaged, feet completely numbed with agony in my feet and every nerve from my recum to pelvic to buttock, etc… The prolapse surgery caused my tailbone to hurt so bad that I couldn’t sit after that surgery. You want to hear the ending?, well, three years ago I went to the Prudenal nerve hope website which is composed by pelvic specialists. I viewed who I can go see. So, I did research on the neurosurgeon in Santa Monica California, Dr Aaron Filler, worldwide known. Many people go over the world to see him, desperately I went in the airplane, laying down in two sits, and with assistance, I went to see him. I’m from California originally and have family there. So, I saw him and he did an MRN which is like an MRI but focus on nerves. The results showed various nerve branches damaged and entrapped. It’s a new technology that I had to pay because insurance only pays for old imaging. He showed me my nerves and said I’m a complex case. That’s his specialty. Anyhow, because I’ve done everything that didn’t work, like meds, nerve blocks, PT, etcetera. He said the last option is surgery. Because both sides of my body was damaged and he did a partial (tip only) removal of coccyx and my nerves everywhere. The surgery lasted 12 hours. He did tell me that his success rate is 95% and he tells his patients that they might end up in the 5%. Well, guess what?, I fell in that 5% failure. After 3 years, I can say that it helped some to not feel so much shocks. As of today, I’m focused to get nerve blocks for the inflammation and flare ups each 2-3 months. I’m worse in my body. I can no longer sit because my tailbone hurts very much. My sciatic on both legs hurts so much. They are always inflamed. I use pain creams to no real help, but some. I can’t walk because the nerves in my feet hurt really bad and my feet get paralyzed by the pain. It’s as walking on niddles and stones inside my feet. I can not use shoes, they hurt me feet bad. I take max strength of gabapentine. I take max strength of Oxycodone (not by choice). I take spasm medicines. I use back pain patches for pain. The list goes on. I can only stand for 10mins in the same place standing, per day. I can only walk for maybe 20 mins, but I have to lay down because feet hurt and all my nerves damaged flare up. I can’t wear underwater. I do much. I’ve given up as far as doctors go. I even did acupuncture and chiropractor before surgery. I’ve done it all. So now, after many years this way, I’m bedridden and live on meds. Plus, I have to get steroid and numbing meds by injection blocks. It has given me so relief when I get the nerve blocked and slowly after nerve block meds bring down the inflammation. I still don’t know why my nerves get inflamed. Tomorrow is my nerve block. It never fails. After 2 1/2 months after nerve block, my nerves flare up again. Not sure if not walking caused my inflammation. I try hard to walk around the house for blood circulation. In pain, but I try hard to walk. I use daily some special stockings for circulation of blood. They actually help with my pain too. Did I mention I have a 5 inch cut on BOTH my buttock from the last surgery? Did I mention that my post prolapse surgery caused me to never be active with my husband. Actually, since that surgery Up to day, I’m no longer able to be with my husband. My sweet husband has been so devoted to me and has shown me what real love is through 18 years of being married. He told me that God made him to take care of me. All he does is go to work and come straight home to be with me. I have gone to tell him to leave me so he can live a normal life. I love him that much. He told me, “hush!, you don’t know what your saying. I made God and you a vow when we got married. In the good and bad. In sickness and health…”. I thank God for my husband. May my Lord bless him. By the way, I realized that I developed other new symptoms from all the failed surgery. I’ll stop. My story is long. I’m sharing my story to help women to never get prolapse surgery and to be very care who they have for Obgyn. Some doctors when doing a Pap smear open up the pelvic fast and injure the Prudenal nerve, that participated in hurting my Prudenal nerve pain. Ladies, my story is real. Please, I never want anyone to suffer as I’ve surferred. I’m glad I have a good and faithful God. Soon, I will never cry or suffer again. I will be in heaven with my sweet Jesus. All of this is worth knowing that my faith and suffering is not in vain. My rewards are in heaven. God bless you all. ❤️ John 3

  44. Very informative article. I am a 64 year old man suffering from symptoms like pain in penis, urgency and increased frequency of urination, frequent sense of defecation, pain in perenium. My urologist tested me for urethral stricture. There is no stricture. My prostate is enlarged (BPH). Can you help me by giving more information. Also do you know any expert near my city. I live in Hyderabad. Thanks.

  45. Hello, have you seen any connection between external hemorrhoids and PN or PNE? I am 42, 2 C-sections 9 and 10 years ago, no problems and then 3 months ago developed a hemorrhoid. (2-3 weeks prior I’d lifted something very heavy and felt something pop in my core, but didn’t have any pain or problem until I felt the external hemorrhoid – don’t know if the lifting did it for sure.) 2 days after feeling the external hemorrhoid, I developed burning pain across my lower abdomen. I also had just been informed of microscopic blood in my urine after routine exam. Ultrasound, CT scan, and cystoscopy were all negative thankfully. A gastroenterologist and then a colorectal surgeon told me that hemorrhoids sometimes trigger nerve pain in the front like that. But my hemorrhoid finally resolved but the burning pain continued – across my c-section scar area and in the spots where I imagine my ovaries to be – creating a smiley shape of pain, worse on left sometimes…. and then the anal pain returned but on the left side, while the hemorrhoid was on the right. Colorectal surgeon referred me for pelvic floor therapy. I’m a few weeks into PT and taking Nortriptyline. Nortriptyline makes me spaced out and feel like I might pass out, so we are lowering dose. PT…At 3rd session I tolerated the rectal exam and they identified that getting close to my pudendal nerve made the pain across my lower abdomen spike. After 4th session I had relief of the lower abdominal pain for a few hours which was wonderful, but then it returned. Rectal pain became far worse a couple of days ago after I attended an event where I had to sit on hard benches on and off for hours. I am 3 months into daily pain and I am terrified that already I am feeling it difficult to sit, always painful. I feel best when I am walking, next best is standing. Lying down always hurts, but not as much as sitting. My physical therapist had me schedule to see her twice a week for 2 more weeks and then move to once a week after that, and she sounds hopeful that I’ll be significantly improved by then – with all that I read online about pudendal nerve issues it sounds like I’m in for a much longer, more complicated road than that? The fact that pressing near my pudendal nerve spikes the pain and that the sitting is getting more difficult… very scary to me. I am seeing a physiatrist specializing in pelvic pain in 2 weeks that I found online and happens to be the one my PT practice recommends – Dr. Allyson Shrikhande in NYC – and my PT said she may give me vaginal suppositories and/or muscle injections that could speed this along. Is this too rosy/optimistic a picture? I’ve only had 4 PT sessions and 2 weeks of Nortriptyline and everyone is telling me things will be fine, but should I be concerned that I don’t feel much relief yet? (and pain was much worse the night after my first 2 PT sessions) Are there other steps I should be taking at this point, or other specialties I should see, or medication I should ask about? Am so scared because it sounds like the longer you live with these symptoms, the more ingrained they get and perhaps harder to treat? I can barely live with this now, I am amazed by the people who describe years of pain. Apologize for long post!! Thank you so much for reading and anything you can tell me.

  46. Please tell me if anyone has ever presented with buttock muscle loss accompanied by tingling, and burning,stabbing pains in the buttock region close to the anis and possibly the opening of the vagina. It is my current situation and mind boggling! I have been screaming from the rooftop and getting cortisone shots in back and buttock region with no proper diagnosis. It hurts most when I lay down, and sometimes sit. But much better when in standing positions. I live in Northern California. Any recommendations?

    • I have had similar issues. Working with my pelvic PT, we isolated the problem to the gastrointestinal tract through internal pelvic PT. We have ruled out some causes. We are pursuing a whole body approach with testing to rule out serious causes. It’s been difficult to find someone with the talents and understanding to take the time to peel away each layer of the problem to find underlying cause. If you do not have a very experienced pelvic PT, find one. Having an advocate to help you negotiate the health care maze is impossible. Believe it or not, a Twitter post on the center’s site relating their absence of concern produced immediate evaluation and appropriate referral AFTER I had left their city to get the basic evaluation to be referred to my alma mater’s center with the help of my alumni association and request for a nurse specialist advocate.

    • My heart goes out to you. Yes!, I can totally relate to you. It’s nerve damage or some type of neuropathy.
      My story is to long and not encouraging because after 9 years with these torture symptoms, Anyone can become depressed. So, I won’t share everything. I can share with you that many professionals don’t know how to diagnose it. If you go to http://www.prudenalhope.com , you can learn a lot about your suffering and torture pain. Don’t just let it go on with the proper Doctor. There is a directory on those who can help you with what sounds like neuropathy in those nerve regions. Get help ASAP before you end up having those pains in the pelvic area too.

      It must be very hard to even wipe your after a bathroom visit. DO NOT ALLOW ANYONE DO SURGERY ON YOU UNMESS THEY COMPLETELY UNDERSTAND AND CAN PROPERLY DIAGNOISE YOU. I MADE THE MISTAKES OF HAVING A PROLAPSE PELVIC FLOOR SURGERY WHICH DAMAGED MY ENTIRE PELVIC AREA ESPECIALY IN THE GROIN PELVIC BUTTOCK SCIATIC ETC AREAS. THE RECTUM WAS HARDER BECAUSE IT WOULD FLARE UP THE NERVES. I ALSO SCREAMED FROM THE TOP OF THE ROOF IN AGONY AND TORTURE. THATS THE WORD: TORTURE. PLEASE BECAREFUL WITH THE DOCS YOU SEE. THEY CAN MAKE IT WORSE IF THEY DONT HAVE KNOWLEDGE OF YOUR SYMPTOMS.
      MEANWHILE, SEE A PAIN SPECIALIST AND GET MEDS FOR PAIN BECAUSE IT DOESNT GO AWAY RIGHT AWAY. GET NERVE BLOCKS WITH STEROIDS. THE STEROIDS HAVE HELPED ME ALOT BY REDUCING THE INFLAMATION OF THE NERVES. I GET THEM EVERY 3 months. BY GOD’s GRACE IM DOING BETTER BUT STILL IN PAIN. MY ENTIRE LIFE CHANGED SINCE I FIRST STARTED GETTING THOSE SYMPTOMS AND UP TO NOW. I REGRET ALL THE SURGERIES IVE DONE TO CORRECT THIS PROBLEM. ALL ITS DONE IS GET ME WORSE. I DID DO A SURGERY THAT HELOED REDUCE THE ELETRIC SHOCKS I LIVED WITH FIR YEARS BUT FOR SOME REASON I FELL IN THE 5% catagory of patients that get worse after surgery. 95% of patients get well after procedure. I flew to Southern California to see Dr Aaron Filler in Santa Monica, CA. This doctor is one of the few specialist in these areas and performs surgery. Your story might be successful after the surgery. They only do surgery if you tried all other options like meds nerve block physical therapy etc… So, visit the site I provided and educate yourself more on nerve damaged or pinched or entrapped. Meanwhile do your nerve blocks and take meds for pain. Get to know your body and don’t do what hurts you. I no longer can sit, stand, lift, walk or sleep on my right side. I only sleep on my left side. I do my most minimal to not irritate the nerves. Use diabetic shocks to circulate your blood floor if you lay a lot.
      There is hope for you. I am a complete case. People have been healed! I’m just saying that I fell in the 5% that got worse. So don’t look at me as if you end up like me. Everyone is design differently. I trust you will find relief. Find a specialist on that directory and travel to see him/her. I was forced to fly to Cali. I’m from Southern California, but now live in Texas. I flew to Cali laying on the airport and wheeled everywhere with lots of pain. Also and most important. If you don’t have a relationship with Jesus Christ, start one today. I couldn’t have made it if my Lord Jesus wasn’t there for me. I read the bible when I was crying and didn’t want to live but the bible gave me hope and life in my inner being that kept me going because as you know it’s very hard living with chronic pain. Jesus gave me life and directed my heart into all truth through His word. Jesus died on the cross for you. He rose on the third day and now is alive, sitting on the right side of the father God. Ask Jesus to forgive you of all your sins in your life. Believe He is the son of God. That He died on the cross for you and rose on the third day. And He will give you eternal life and will never leave your site. Believe in Him. I believed in Him and eventhough I’m hurting still, I know that my body is fallen and not perfect. Our symptoms is part of our body breaking down. And Jesus will never leave us. He can even heal you if He wants. It’s all about faith. Faith in Him and faith in all we know of Him and the father God. You will find Him if you read His written word of God. As a Christian and a woman that has suffer for many years with nerve damage from my waist down to my feet… I can honestly tell you that no one on this earth will sympathize or understand and believe in you except for Jesus Christ. You will find yourself lonely in this chapter of your life. And if you don’t want to lose hope in yourself, hope in God. He is perfect and often we don’t understand the whys to our questions. I can tell you that He will sustain you and provide all that you need, even healing. He will carry you when you can’t make it anymore. Have this hope… That you can only made it in life with this chronic pain is with Jesus. I can tell you so many stories how Jesus helped me but it would be too long to write. I pray you get right with Jesus and ask for forgiveness of your sins. He will forgive you and give you life inside you. You will have a peaceful heart and than you will be able to support all that is coming your way and even now. You won’t make it alone. This road of chronic suffering is really hard walking alone in it because eventhough you have loved ones that want to help you, they can’t. It’s all inside your body. Nerves! You can’t see them with the naked eye. They might even say you are crazy. That’s why I’m telling you from experience that without Jesus Christ all things are possible and without Hesus nothing is possible.
      That’s my help for you:
      1) visit http://www.prudenalhope.com to learn more about nerve damage, entrapped, or pinched. Most cyclist end up with buttock and anus numbness, pain, shocks, nerve pain, etc… AND 2) Hope in Jesus Christ. You will end up lonely in this chapter of your life because friends and family can not understand your suffering. Only my sweet Lord can sympathize with our pain. Hope in Him. I can send you a bible if you need to. If you want to talk about your pain and my years, over 8 years, of experience. Send me your cell or home number and I will call you. May the Lord of host heal you and give you wisdom how to deal with this chapter in your life and bring you people who can relate to you in order to help you. In Jesus’ name I pray this for you❤️🙏🏻

    • I’m not sure why my long email to you was not allowed to be posted. Maybe because I said that I can call you to better talk about our sane condition.

      I hope I read my email wrong and received my long email. Let me know and thanks. Praying for you❤️🙏🏻

  47. I have had pain in my tailbone since january 2016. I have had two xrays ,two Mris, acupuncture, adjustments by chiropractors, corticosteroid shots and none of the above has provided relief for more than a couple of days. I went to a neuro surgeon he told me neither the MRIs ot x rays indicate anything is wrong with my spine. I am looking for relief. Help if you can

  48. I just started physical therapy for pn, but I’m also scheduled for an injection this week. I’ve had the pain for five years but I’m nervous about the injection. Should I give the p/t more time or is the injection pretty safe?

  49. There’s often mention of Pudental Neuralgia being caused by Inflammation but no further info on where this inflammation comes from!
    I get both stabbing sensations and “unwanted” sexual sensations in that area-they happen randomly and just come out of nowhere..
    I’m wondering if it has to do with VIP hormone,inflammation and sex hormones but there is no information on this at all!

    • Inflammation can happen for many different reasons- infections, injuries, other conditions that cause inflammation (endometriosis, lupus, etc). The stabbing and sexual sensation can be from pelvic muscle rights and dysfunction and other causes. Hopefully you can find a pelvic physical therapist or physician who understands pelvic pain

  50. Is there a doctor who specializes in this pelvic pain in the Detroit area? I have been taking Lyrica which really helps but I would like to get off the drug. I have seen a PT who has taken some special training but what she did didn’t really help. I have been doing her excercises for several months. I was told to quit doing yoga. This pain didn’t bother me at yoga. Sitting is the trigger.

  51. Can sitting pain be triggered by cluneal nerve? Which could be cross talking with pudendal? My pt does not think pudendal is the main culprit as I do not have pain internally vaginal and rectal. Pelvic floor is fine. I do feel some sharp stabbing pain in the vagina. Even standing I can touch skin areas that recreate the burning , kind of like you turn on a match, you press and it causes a flare up of the symptoms. I can recreate this on my lower back, outside part of the thigh, hip, or buttock I get those sensations. It is definitely nerve related.

    • Cluneal would be just one of the many different differential diagnoses. It can also be a combo of spine, and general muscle rightness in that area. Yes- there’s cross talk. The good.m news is there is usually a way to calm down the nerves there.

  52. Misdiagnosis is a common problem. The whole body needs to be addressed. Pain may be referred. A very detailed history needs to be done. Usually a team from various disciplines needs to work together. More than one problem may be the cause. Diagnostic workup often include a complete physical of the whole body. As each possible diagnosis is added to the list, it needs to be addressed. Among possible diagnoses are spinal degeneration and cord compression, vascular problems, gastrointestinal problems, scar tissue or adhesions, tumors of the pelvis and abdomen, muscles working improperly or in spasm and gynecologic problems including endometriosis and ovarian and uterine disorders. It really takes a team working together to find the cause objectively. Pelvic physical therapists are a team member as are massage therapists and trauma therapists using a variety of interventions to find the cause. Nerve blocks may block pain from a variety of causes. I know because my evaluation is still ongoing. I see my pelvic PT and massage & trauma therapist weekly. I have been referred to a gynecologic oncologist who is a robotic laparoscopic cancer specialist to find the cause. Several possible causes have been identified and resolved. It’s like peeling an onion: removing each layer or potential cause with non-invasive methods. It is often time consuming and expensive but avoiding radical interventions can often be avoided.

  53. Will Pudendal nerve issues cause a crawling sensatiom inside the vaginal area? I have been seeing a pt for womens health for close to a year and was doing well at first and seemed to have slid backwards. This is a new sympton and just curious if it can be linked.

    • It can be linked potentially, but this could be something new too. Sorry to be vague, but symptoms in that area likely need further evaluation, particularly if you are having new symptoms or “sliding backwards.” What big city are you close to?

  54. Do you possibly have endometriosis? Implants on the nerve could cause nerve type pain with its inflammatory symptoms. A multidisciplinary evaluation by a qualified specialist may help find the cause.

    • No I’ve had two pelvic ultrasounds don’t have pelvic pain or Abnormal bleeding. I do have vulvar pain every minute of every day and when I sit, my ischial tuberosities cause intractable pain I feel like I’m sitting directly on my bone. The MR neurography showed enlarged left pudendal from the medial aspect ischial tuberosity tapering into the internal obturator

  55. Ask yourself did I have painful periods? That’s endometriosis. The only way to diagnose it is by biopsy. It cannot be seen on CT, MRI or ultrasound.

  56. I have been diagnosed with pudendal nerve intrapment it’s been 4 years of constant pain I live in pgh pa been to see pt some help

    • Have you seen a pelvic PT? Spinal surgeon? Had a multidisciplinary workup? You may have nerve irritation, sacral nerve irritation among other potential differential disgnoses.

      Pudendal blocks are NOT specific.

  57. I’ve had a stabbing pain on the right labia. By the end of the day it turns into an all out ache that seems to radiate. I’ve done PT, one steroid injection, a series of Prolotherapy. I’ve just started Lyrica. One doctor thought it wasn’t pudendal nerve, but rather the ilioinguinal nerve since I have no urination or bowel movement issues. Anyone have any ideas? I’ve been almost suicidal over the thought of my future.

  58. my pelvic floor became detached from the ischium during childbirth in the ’50s. By the 1970s the entire contents of my pelvis had prolapsed. Back in the ’70s the doctors didnot have the expertise that’s available now so I was piecemealed (one step at a time) over the course of many years. I saw Dr Hibner a few years ago and after the 3 injections I was still in pain but never followed up. I called and called and asked when was I going to be treated and never got a return call.

  59. I’m well versed on your issue. I’ve had plastic surgery for vulvar vestibulitis. Prolotherapy causes scarring. Lyrica treats some nerve issues. Never did anything for my vulvar discomfort. Pelvic PT plus vulvar vestibuloplasty worked for me. I recommend you see a highly experienced pelvic physical therapist.

  60. Hello, I’m about to write a blog about just being diagnosed…if you could read my blog and comment/feedback with possible helpful tips/info I’d appreciate. Your blog was also very helpful as well, although I just got diagnosed, but still very informative!

  61. Please l need help my name is bomnie summerfield l had mesh removel and am scared to death because l have pavlic floor pain it is causeing so much fear l cant control please help me l need help now

  62. I have lived with pudendal nerve entrapment for over 3 years I’m a male 57 years of age and cant sit for over 20 minutes, I have testicular pain , anal pain , and chronic pelvic pain every day also have gone from Doctors to Doctors and have had injections but no results , I have had my prostate removed because of cancer last year on January the 12th and now cancer free, and now Doctors want me to have the pump for relations but I say If I cant have sexual intercourse because the pain will be worse then I don’t want the pump until this pain is solved once and for all, I live in Miami Florida and need to know if there is a Doctor that can help me with this, Is there a doctor in Miami FL that does this type of surgery procedure, please help me, I cant live with this pain any more my life is a disaster, and my wife is very sad that I have to live with this pain every day of my life, My cell # is 786-356-1559

  63. Hello,
    A few years ago, I fell on ice in my driveway (blacktop) on my bum, with my back straight up and legs straight out in front of me, just going down the stairs of my house and missing the last step.
    I was starting to have vulvar issues but something started later, loss of sensation in vulva on the left side and at the same time stinging, burning, itching there too. And with that, constant sciatica-like burning and radiating pain in the left side of the sacrum, through the lumbar region and down.
    I have found a doc in PA, (which took years to find), who has diagnosed me with PNE, among other things, without looking at an MRI and I am getting nerve blocks and medication for dialing down the pain. He thinks the nerve is always aggravated.
    I’ve done PT for tailbone rehab this year because for some reason it got worse 2 years after I fell (maybe due to spinning classes, bootcamp workouts, dead lifts, squats, all too much of it?). 3 sessions of PT gave me hope again that my tailbone would be better. I even learned tips on how to relax the pelvic floor and psoas. I just don’t seem to get really better any more than where I am now. I am at a better point but the pain comes back.
    I have a TENS at home that does help with the pain a bit.
    But I’ve stopped all sports and I’m going crazy not doing anything. I’m gaining weight and I have a umbilical hernia to top this off.
    How do I know that I am following the right treatment, for the right diagnosis (PNE)? Could it be something missed in the MRI report at the lumbar / sacrum level?
    I went from being absolutely fine and healthy to feeling so limited in my life and I have a family to take care of and I’m in my 30s!

    • My PN was secondary to pelvic adhesions and endometriosis missed by a previous surgeon.

      I would advise a series of pelvic PT, identifying aggravating factors and correcting these to prevent recurrence.

    • Dear Julie, Fully fully empathise with lack of sport /outdoor full on activity which drives me crazy too: physical exercise was my antidote to work and what uplifted my soul. And now it’s all gone but for short walks if I feel up to one, bedevilled by pain and discomfort. Like you I have no real idea as to proper diagnoses (“pelvic neuralgia/pudendal neuralgia(?)” is on the medical letters) or if in fact it makes any difference to treatment. Medical knowledge seems to be sorely lacking around this. I am affected in the rectal/sphincter area and have seen various specialists, had injections, pain management, chiropractor with pelvic expertise (nothing helped) and now just take various prescription drugs, trying out any less orthodox treatments that seems possible….no luck yet. Like you I feel so very limited and this is what I have to get my head round…I don’t feel the person I was and still expect to be. Have turned to meditation and mindfulness but I can’t help feeling so frustrated and despairing as to whether it will ever get better (5 years now).
      But our children have long since gone and for you this must be so difficult, not being able to participate in all he active stuff that children want and you want to do with them.
      Sue

  64. Hello,

    I am suffering from pelvic pain for 3 years now (pain while sitting, erectile dysfunction bow el dysfunction etc.). They found lots of spasm/trigger points (at least 8) in all the pelvic area (obturator, piriformis etc.) But they don’t succeed to fully relieve them ( more than 30 session). Moreover I am now suspecting PNE. I live in belgium you maybe know some healthcare provider there that can help me.

    Thanks in advance.

  65. Had a full hysterectomy in May 2015 due to extensive endometriosis, pelvic congestion and adhesions. Post surgery I’ve had severe pain in my right labia and down my right thigh. I had another MRI that showed nothing. A vascular surgeon saw nothing. Sent me to a pain clinic that doesn’t deal with pelvic pain. Went to Dr. Weiss in San Francisco and paid out of pocket for PT. still no relief so he did a nerve block not guided by ultrasound. It was very painful and now 3-4 weeks later still no relief. What do I do now? I’m not even certain it’s neuralgia. Any suggestions welcome.

  66. I have been diagnosed with recurring prostate infections. I have most of the symptoms of PN. Interested in PT….how should I get started?

  67. Hello it’s Deb again.
    Well I just wanted to give you an update on my status and I’m looking for answers again. My pain is getting worse everyday. Now it’s effecting my legs. My left leg gives out on me a lot and both are extremely painful. Now, I know I have a herniated disk on my right L4-L5 level and I also know that I have an 8 degree scoliosis curve in my lumbar spine. I have a feeling this is related to my pudendal neuralgia. Is that a possibility? I’m also flying out to Atlanta Georgia to try the procedure cryoablation. I feel like this is my last hope. I have done almost everything else. I’m starting to get really scared and facing the fact that this in fact may be the rest of my life and even though I’ve been suffering for almost 16 years now I’ll never get back to where I was 3 years ago before I decided to have a surgery that was a mistake that made me worse and what I am today. I don’t know how much more I can take. Deb

    • Hi Debbie, so sorry you are hurting so much. My story is quite different, but alike to some degree. I won’t share my store because it’s too long and I don’t want to get you scared. Rather, you need hope now. Just know I can relate to your leg and feet numbness and pain and weakness of them. I did the surgeries with no help. So, after doing all I can and did without help, I finally realized that I will end up this way, very limited, and realized that having nerve blocks that cause my flare up of nerves to calm now. The pain doc uses steroid shots and numbing meds in the nerve block procedure. It helps a lot. Hi thank God. I can move alittle more with those blocks. This pain doc is trained in prudenal nerve, sciatic nerve, spine injures, etc…
      I just thought of something, have you tried a sports rehab specialist? They give Botox shots for inflamed nerves or spines. They help many sportsman who have spine injures and/or any body injures. Why not try them?, I did. The doc used Botox on me and it helped. The only problem for me is that the doc I mentioned is in Huntington Beach in So Cal where I’m original from and now I’m in Texas where pain mgrs don’t do Botox because it’s very expensive and insurance don’t cover it. Maybe in your state they do offer them. Try the sports doctor. Have you tried them? Who would know more than injuries than sports rehabilitation doctors. They see all kinds of sports individuals who injured spine or head or legs, etc… that might be your doctor.
      Keep me updated. I’ll pray for complete healing dear sweet friend. Maybe I’ll share my life of suffering with you when you get better. I don’t won’t you to see where I was, rather, I want you to see that with God all things are possible. You must believe that Jesus can heal you. I’m still believing He is going to heal me completely. Even though I live in chronic pain and I suffer a lot, I know that my sweet Jesus loves me and that in His time I will be healed. My heart is full of joy and love, and my body lives in chronic pain and l’m bedridden majority of the time. If you want the joy that I have in my heart in the most of all the suffering, let me know. I can share Jesus with you. He has changed the inner person in me. With great compassion and love ❤️

  68. Not any useful information here. Great. Tell me the internet is full of incorrect info and the list people’s complaints about what hasn’t worked or the one thing that did work and so everyone should do it. How about some options. How about talking about the EMG process and what to expect during and even after because right now I’d rather be dead than feel the pain I’m feeling because Dr Nita Desai at Dr hibner’s office never spent more than 15 mins despite the $500 I paid to see her (oh I mean her fellows) and no one ever listened. So I got away from Arizona and found Dr mark Conway who sat for an hour and listened intently to my history and explaination of pain before even going into the exam room. 3 weeks later and we now know Dr Desai’s diagnosis of it only being a muscle problem was 100% wrong so please don’t tout Dr Hibner’s office. I wasted so much money time and lost my life due to pain that’s been diagnosed in 3 weeks. Put some valid info on your site and give some real options for providers.

    • Thank you. Who is this Dr. Conway. I’m actually traveling from New York to Atlanta Georgia to get cryoablation done. I almost feel like it is my last hope. Yes, they want to do an EMG on me. But to tell you the truth I’m scared out of my mind to get it done on my pudendal nerve for the flare up it may cause. I’m already In so much pain I can’t imagine the scale going any higher. I was advised by one of my doctors the only one I still trust not to get it done. I’m so lost and frustrated and in agony. Yes, I’m to the point where I’m home bound now to. I hardly ever leave my apartment. I’m now taking care of by others. It has really become very sad. I never thought in a million years a person who use to have her own patients would one day be taken care of as a patient like this. It is a disgrace. Yet I still keep my hope Alive. Deb

  69. Pingback: Pudendal Neuralgia – There is Hope! – The Pelvic Guru

  70. Hi
    I am an orthopedic physical therapist however have little knowledge on how to treat pudental neuralgia. I think my husband has it as a result of a hernia surgery. He was cleared by urologist and his surgeon, however pain continues. Can you please recommend exercises and manual treatment I should do with him?
    Thank you in advance

    Farrah

    • Hey Farrah,
      I am also a physical therapist and I suffer from pudendal neuralgia. I hate to say this but it is best to actually see a pelvic floor physical therapist because yes you can adjust the sacrum and make sure his hips are in alignment. But as far as the real manual therapy that is done for this, I have had almost 2 years of physical therapy and it required skills I do not possess and you have to get certified in this type of education through continuing education. Some of the internal massage once you have it done, you can buy equipment to help reach trigger points on yourself or if you find a good physical therapist with skills in this field maybe they can show you. A good manual therapist in the pelvic floor region should be able to direct you. It’s very hard though when you are the patient and are suffering to do these techniques on yourself. I miss my job very much. 😿 Also you can ask here they should be able to tell you some of the physical therapist in the area you are from. I hope that helps. How long has he been suffering now for? Deb.

  71. I wish there were a list of exercises to avoid, as a woman with pudendal neuralgia.
    I am doing physical therapy at home, with a “wand”, to massage and relax my pelvic floor. I need to lose weight, and the only way to do that is to incorporate exercise into my life, which I have done. I have done workouts on an elliptical and treadmill with no adverse affects. My PT said that I should be able to use the bike, if I choose one with a wide seat, and spend no more than 10-15 minutes on it at a time. I cannot work at a job where I have to sit for hours at a time, which is how I developed pudendal neuralgia in the first place.
    Recently, I started doing the 30 minute workout at Planet Fitness. From what I’ve read here, I should avoid the squatting exercises. When I do the workout, I do the step workout, then the machines at the lowest weight.
    On another site, there was a list of exercises to avoid if you have PNE….which is NOT the same as pudendal Neuralgia. If I were to follow that list, I might as well do nothing. How am I to lose weight if I can’t exercise. I am frustrated. Suggestions would be appreciated.

    • I’m sorry we don’t have that type of list! We are revamping our website and that will be available at some point in the next few months. The biggest key is to move (in any way that is comfortable), do any exercises that don’t increase YOUR symptoms and truly eat well. Eating well is 75 of weight loss

  72. Pingback: Temazcal, Heat, and Humidity Help Pudendal Neuralgia - Alive N Healthy

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