Pudendal Nerve Entrapment (PNE): Your Questions Answered

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Part III of our “Demystifying Pudendal Neuralgia” Series 

How does PNE (pudendal nerve entrapment) occur? How is it diagnosed? When is a patient a good candidate for the pudendal nerve decompression surgery? When are they not?

These are among the questions we asked two of the leading experts on the controversial diagnosis PNE and the decompression surgery associated with it: Michael Hibner, M.D., a gynecologic surgeon at St. Joseph’s Hospital and Medical Center in Phoenix, Ariz. and Mark Conway, M.D., a gynecologic surgeon at St. Joseph’s Hospital in Nashua, New Hampshire. (See full bios below.)

Q: How does PNE occur?

Dr. Michael Hibner

Dr. Michael Hibner

Dr. Hibner:

In my experience it is usually a traumatic event. In my practice, the majority of women with PNE have had some kind of gynecological surgery, such as some kind of mesh procedure. Another cause for women can be childbirth. The nerve runs on the inside of the bony pelvis and as the baby’s head comes out it may crush the nerve, which is a mechanical compression. There is also the possibility of the nerve being stretched during childbirth, which is a tension injury. Another possible mechanism PNE can occur is the result of vigorous exercise, such as lower extremity exercises, the so-called “dead weight lift,” and bicycling.

The pudendal nerve can be compressed in various locations along its course. The nerve runs between the sacrospinous and sacrotuberous ligaments, for instance, and entrapment between these two ligaments is probably the most common cause of pudendal neuralgia. This is where the nerve is compressed by the suturing of mesh placed during prolapse/incontinence surgery.

Another area of compression is Alcock’s canal; entrapment here is characteristic of pudendal neuralgia following vaginal childbirth. Compression also can occur where the clitoral nerve continues underneath the pubic ramus to the clitoris; this is typically where the nerve is compressed by a bicycle seat.

Dr. Mark Conway

Dr. Mark Conway

Dr. Conway:

It can occur from a variety of different mechanisms. I tell my patients: There are lots of roads that lead to Rome. Many patients I deal with have a direct or an indirect surgical injury to the nerve such as a surgery to correct prolapse, especially when there is a use of prosthetic mesh to correct the prolapse. Oftentimes those mesh materials are put in close proximity to the pudendal nerve, and can cause injury that way.

Other mechanisms include trauma to the area from a car accident for example where the pelvis fractures or whiplash type of phenomenon occurs. Also, taking a direct fall to the buttock area can cause scar tissue to form from some degree of hematoma formation, which would cause some degree of bleeding back into the area where the nerve runs between two ligaments, so that can lead to scar formation that can trap the nerve or irritates the nerve.

Still another mechanism is obstetrical trauma. There are different ways for this to occur. One way is for there to be bleeding into the nerve space, and then as the blood clot resolves it leaves fibrosis and the nerve is compressed that way. Lifestyle can also play a role such as if a patient is an avid cyclist.

Another thing to consider is there is probably also some sort of anatomic predisposition in some patients, meaning the space between the two ligaments that the nerve traverses is more narrow in some patients, which will set them up to get the condition. Another thing that we often see in surgery is that the nerve trunk itself actually perforates these ligaments meaning it actually goes through the ligaments rather than between them. Therefore, they are kind of born with a low level of entrapment that is then very easily triggered later in life, sometimes by very innocuous activity.

Stephanie adds:

It is extremely plausible that surgical insult can entrap a nerve. Red flags go up when patients tell me they had no prior symptoms of pelvic pain and then woke up in the operating room with signs of pudendal neuralgia. I immediately refer these patients to consult with Drs. Conway and Hibner.

Q: How is PNE Diagnosed?

Dr. Hibner:

There is no way to definitively diagnose PNE. It is a diagnosis of exclusion.

The history is extremely important. First off, the patient has to have had a traumatic event or “events” because  a series of micro traumas can lead to entrapment. Riding a horse for instance is an example of one micro trauma.  One does not just wake up one morning and have PN (unless there was the above-mentioned surgical insult).

In our practice we have a system to determine what is causing a patient’s symptoms and whether the pudendal nerve decompression surgery is a treatment option.

First, when a new patient calls we schedule them for several things. They all get a pelvic MRI. It’s a 3-Tesla MRI  that is focused on the pudendal nerve, therefore, we perform this even if they have had an MRI elsewhere. The second step is a one-hour physical therapy evaluation with our pelvic floor physical therapist. This includes a history and an physical examination. This is done to identify musculoskeletal issues as pain generators. Once I have the MRI I evaluate the patient. Based on their history, PT evaluation and MRI results we come up with a plan.

What I generally do with most of the patients is start with Botox injections into the pelvic floor because almost all patients with PN or presumed PNE have pelvic floor muscle spasms. You want to eliminate that muscle spasm first before you do anything else. The patient undergoes Botox injections, which takes about two weeks to start working. If the patient continues to have pain after the Botox then our PT re-examines them to determine whether the muscles have relaxed or not. If the muscle have not relaxed we take into consideration whether we injected enough Botox or if we injected the right spot and repeat if necessary. We see about 80 percent of our patients improve after Botox, and it they do improve, it’s a significant improvement. Botox typically has an “all or none” effect. It either works well or doesn’t work at all.

However, if the muscles have relaxed and they are still in pain then we do what is known as CT guided pudendal nerve blocks. (These nerve blocks can also give us information about where there is compression if we suspect compression. This allows us to decide which surgical approach to use.) If they don’t work then we start talking about possibly doing the decompression surgery. In the meantime, patients are doing PT.

I should point out that I very rarely operate on anyone who improves as a result of our protocols, even if it’s only a small improvement.

Stephanie adds:

I think the etiology is the strongest diagnostic indicator. Because there are no tests to diagnose entrapment, a team approach with a thorough assessment is absolutely crucial.

Dr. Conway:

The most important components to the workup and diagnosis of PN are the history and physical exam. In short patient’s complain of pain in the distribution of the pudendal nerve increased with sitting. The pain can be a burning sensation, lancinating, electrical zapping, or aching. The pain is usually not as bad in the morning, and is at least somewhat relieved sitting on a toilet seat. The patients may have a variety of other symptoms including urinary, defecatory, and sexual dysfunction. They often have a clear mechanism leading to the condition(i.e. antecedent surgery, sporting activity etc.). On exam they may have allodynia, skin rolling sensitivity, pelvic floor hypertonus and tenderness.

Most importantly compression of the nerve on rectal exam between the SSL and STL will cause pain and flare up the patient’s PN symptoms even after the exam is over.

Can you tell us about your diagnostic workup for PNE?

Our diagnostic work up varies to some degree on the patient. We offer nearly all our patients a pudendal nerve EMG. This is a highly specialized test devised by Eric de Bisschop, MD,  a neurologist in France. It measures a series of sacral reflexes, and is helpful to confirm nerve dysfunction.

It’s use to localize the possible site of nerve irritation, or quantify the degree of nerve dysfunction is less clear. We have no large database of published reports on the utility of the test, but in our quite substantial clinical experience it correlates well with patient complaints and operative findings.

Imaging such as MRN or 3T MRI is also available with limited data on its usefulness. I order these tests on select cases where the standard evaluation is not clear and further data is needed.

PT evaluation is also essential to evaluate the myofascial component of the pain and to look for other possible pathology such as hip pathology. Of course other studies such as lumbar MRI, hip MR arthrogram etc. are used as indicated to look for other causative or associated pathology. In addition, evaluation for autoimmune disease or Lyme disease may be indicated in some patients.

Also in some patients selective diagnostic nerve blocks (i.e. pudendal, ilioinguinal, PFCN, or obturator) are used to further elucidate which nerves are affected. In some patients they will have a totally effective PN block with numbness in the nerve distribution, but no pain relief. This would help exclude PN/PNE as a diagnosis.

Lastly, we do not use Botox as standard therapy but on select cases where severe pelvic floor hypertonus not responsive to PT is a possible cause of the pain.

Q: Can entrapment be seen at the time of surgery?

Dr. Conway:

The answer is yes it can. However, it’s important to keep in mind that we can’t always go by what we see as actually a measure of the patient’s function. At this point we have no studies over time that actually get a correlation of patients’ preoperative, surgical, and postoperative findings.

Dr. Hibner:

Yes.

 Q: How can you tell if a patient has PN or PNE?

 Dr. Hibner:

 Again, there is no definitive way of telling.

However, the pudendal nerve motor terminal latency test was used in the past. This test measures the conduction velocity of electrical impulses. This test is not dependable because there is a high rate of both observer variability (two different providers can get two different reads) and variations among patients who have had previous vaginal deliveries or pelvic surgery. A second test, the sensory threshold test, also has questionable reliability. This is test is done by placing varying temperatures on a patient’s skin in the different territories of each nerve branch. The tester asks the patient to report what they feel. If there is a sensation other than heat it is considered ‘positive’.

The biggest issue with these tests is that if a patient has pelvic floor muscle spasm and it is putting pressure on the nerve, he or she will get an abnormal reading. As I already mentioned, most patients with PN have muscle dysfunction therefore we cannot use these tests to confirm PNE. These tests over-diagnoses patients.

Magnetic resonance neurography (MRN) is another test that is used by some physicians. This is another type of MRI. I view this test as very questionable. I have discussed it with my neurosurgery colleagues we all agree. When patients bring me these test results they do not factor into my calculation in any way.

Lastly, there is the three tesla  MRI, which I mentioned above. The radiologist who is really known for administering this test is Hollis Potter in New York City. We do a similar test here at St. Joseph’s. And the bottom line is that with this MRI you can not really see the pudendal nerve. Due to the resolution of the test, the MRI pixels on the screen are larger than the actual nerve.

Having said that, we do have our patients get this MRI because there is some information you can get from it. The thinking is that the pudendal nerve runs together with the pudendal vein. Indeed, they’re really attached to each other. So if the pudendal nerve is compressed the pudendal vein is going to be compressed and if you compress the vein, there is varicosity that you can see on the MRI. Again, this is not a direct view of the nerve compression; it’s more of an indirect view showing that the vein is enlarged.

Therefore,  the MRI as important. For example, I saw a young patient in her late 20s, who for many years was treated by a top vulvodynia doctor with ointments. When she came to see us she had the MRI done, and on the MRI we saw that she had a tumor in her pelvis that was pressing directly on her pudendal nerve. It was a benign tumor that needed to be removed. The point is that MRIs can provide useful information.

One last thought on using an MRI to diagnose PNE: I think honestly if you want to use an MRI to diagnose PNE then you first have to have a clear understanding of what “normal” is. If one is going to make  strong statements that there is nerve compression than we have to show what the normal picture is. Likely, there are people walking around with what we would classify as entrapment that are asymptomatic. With that said, MRIs cannot confirm PNE and patients need to be aware of this.

At the end of the day, no one can say with 100 percent certainty that the nerve is compressed. I look at it like a jigsaw puzzle that we put together using the patient’s history, symptoms, the exam, and then trying to allow for all the other things that could cause pudendal neuralgia. That’s how I make the diagnosis. It is very unlikely that the diagnosis can be made in one visit. The only time I make a diagnosis in the first visit is with the patients who had a surgery and wake up  in the hospital with severe pudendal nerve-type pain. In this case, I assume that the nerve has been impinged inside the mesh directly.

Dr. Conway:

How would you diagnose PNE prior to operating on somebody? The fact is you can’t. The imaging techniques available haven’t been proven in any kind of large controlled trial as to how accurate they are and how well they correlate with any surgical findings. We certainly still use those techniques to try to get a better idea of the nerves condition sometimes they are very helpful, but other times they serve up a lot red herrings as far as what the nerve’s condition is. In addition, the pudendal nerve motor terminal latency test can be used, but there isn’t a lot of data on how accurate it is in predicting outcomes on surgeries.

What I always say to patients is that we need to look at how they respond to treatment and start with the least invasive things and then move up from there. We should almost nerve jump to surgery. However, there are a couple of instances that might be exceptions to that rule. For example, there have been patients who have a history of either mechanical trauma or vehicle accident or pelvic fracture etc. or surgical injury where people say” I have never had these symptoms at all prior to surgery or “so this event happened and it’s a major event and ever since then I’ve had the pain”.

And not just the pain, but the patients also actually have end organ dysfunction, such as incontinence or they have numbness. Those patients might be better served to move more quickly to have the nerve operated on because the worry is the longer you leave it at that level of dysfunction, it will just get worse and worse and may be unrecoverable. So that’s the one time where I will be up front about surgery. But that’s about five percent of cases I don’t have an exact number but it’s pretty unusual for me to have that conversation.

Stephanie adds:

I think we are all on the same page here. The team approach is crucial to attempt to differentiate between myofascial causes of PN and entrapment causes of PN. A patient’s response to various therapies can also help us determine the sources of pain. If a patient responds to pelvic floor physical therapy or Botox it is likely myofascial and not entrapment. It seems unlikely that PT would be able to decrease symptoms in cases of actual entrapment.

Q: If you make the decision that the patient’s symptoms are being caused by an entrapped nerve than is surgery the only option?

Dr. Hibner:

If we conclude that there is PNE, first off, PT is not going to help. In surgery I can see scar tissue  around the nerve and there is no physical therapy technique that will free up that nerve from the scar tissue.

PT is the key treatment for PN but not for PNE.

Adds Stephanie:

My primary concern is that we have no way to determine if non-surgically induced PN is caused by entrapment. I do agree that if entrapment is confirmed, which really is based on history, surgery is warranted.

Dr. Conway:

I take a very practical approach with patients, except in the (post-surgical) situations mentioned above. I tell patients to start with the pelvic floor with physical therapy, potentially using nerve blocks as well to reduce nerve irritation, medication to reduce nerve hypersensitivity instructing them to avoid the activities which exacerbate their pain, which primarily involves trying to limit sitting and also other physical activities that increase their pain. And if the patients respond that’s great; I’m not saying they don’t have nerve entrapment, I’m saying the nerve entrapment they have can be treated conservatively.

What other treatments are you using for PNE?

Dr. Hibner:

We are using ketamine to treat patients with suspected PNE. We IV- infuse the ketamine, which is an old school anesthesia that isn’t used anymore due to its propensity to cause hallucinations. When it is infused in a dose lower than the hallucination inducing dose, and it’s infused for more than a week in the hospital, it can somehow reprogram the nervous system giving patients a different perception of pain. The great majority of patients experience improvement in their symptoms.

However, it’s a lifelong thing and must be repeated once or twice a month in the office for four hours or so. In addition, these treatments are experimental and are not covered by insurance. They can cost patients thousands of dollars. In addition, ketamine works after surgery. To go this route, I will administer a ketamine infusion during the surgical procedure and then continue it in the hospital afterward while the patient is in recovery. We can also do a five-day in-hospital infusion; however, it is not always covered by insurance. This is our latest protocol, and it more effective than surgery alone.

In addition to the surgery and the ketamine infusion, we also administer Botox. We’re really trying to hit the pain on every front. With the surgery we are decompressing the nerve, with Botox we relax the muscles, and with ketamine we are reprogramming the spinal cord or the central nervous system.

When is surgery NOT the best course of action?

Dr. Hibner:

The patients that we feel the least good about surgery have had the condition come out of nowhere, and it’s hard to figure out why a patient would have a problem in this area. Also, we are concerned when nerve blocks don’t help at all. The patient feels the numbness, but continues to feel pain. Typically, if patients have a good response to a block, better chance of having a better outcome. In addition, patients who have pain on both sides may not have a good outcome.

Lastly, studies show that elderly patients and patients who have had their symptoms for a long time have less of a chance of a good outcome.

Check back for Part 2 of our Q&A with Drs. Hibner and Conway where they’ll discuss the pudendal nerve decompression surgery, the risks of the surgery, and when it can be considered a success/failure, among other things.

If you have any questions or comments for Drs. Hibner and Conway, please leave them in the comment section or email to: blog@pelvic

Dr. Hibner is director of the Arizona Center for Chronic Pelvic Pain, St. Joseph’s Hospital and Medical Center, Phoenix. He is a former fellow in advanced gynecologic surgery at Mayo Clinic, Scottsdale, Ariz., and is now professor of obstetrics and gynecology, Creighton University, Omaha, Neb., and associate clinical professor of obstetrics and gynecology, University of Arizona, Tucson. 

Dr. Mark Conway is the head of the obstetrics and gynecology department at St. Joseph’s Hospital in Nashua, New Hampshire. Dr. Conway, a Fellow of The American Congress of Obstetricians and Gynecologists, heads a comprehensive pudendal neuralgia treatment center offering conservative therapies, medication management, a surgical solution to treat pudendal nerve entrapment as well as comprehensive post-operative care.

 


152 thoughts on “Pudendal Nerve Entrapment (PNE): Your Questions Answered

  1. I has symptoms of severe pudendal neuralgia. After two years of treatments I was dx with tarlov cyts bilaterally at S2-3.Had surgery with the best Tc surgeon but pain continued.Now have pudendeal nerve interstim which is helping my pain.How do you view TC and neuromodulation?Have you seen a person have both TC and PNE?Thank you

    • Dear Nancy,

      I have not had a patient with Tarlov’s cysts and a neuromodulator. However, I do have patients with Tarlov’s cysts who also have pelvic pain and/or PN.

      All my best,
      Liz

    • Dear Karen,

      I’m not familiar with an autoimmune disease that causes PN like pain. That may be a question better suited for one of the MDs that specialize in PN, either Mark Conway, MD in NH or Michael Hibner, MD in AZ.

      All my best,
      Liz

  2. Dr. Hibner is the only man I feel can give me my life back at this point. I see he is affiliated with Creighton Omaha, NE. I am in Omaha unable to sit or live pain free since my 8/22 surgery for prolapse repair and hyster (no mesh was used). I’ve been on gabapentin and been to pelvic floor pt for months for this since surgery. My euro gyno at Methodist women’s hospital.. Dr. Rooney said I will never live pain free again. I’m only 37. 🙁 .

    • Heather, I am in Omaha too! I did a quick search and couldn’t find info on Dr. Hibner at Creighton. But my advice to you would be LEAVE Methodist and get another opinion. I am in a different situation medically, but I can tell you that I mostly wasted two years of my life trying to take their advice, and now have learned that I have several other treatable problems that they were ignoring. The clinic has a strict protocol for patients (which I believe is to push drugs and little else) and if practitioners don’t follow that protocol they get in trouble. Have you noticed how many practitioners have left the clinic? And then that leaves us patients that need someone to think outside of the box suffering in pain with no help and being told to do the same things we’ve already done that don’t work.

      • Hi Sarah!

        I did take it upon myself to go to allegent health and find an orthopedic specialist to give me an mri. This showed tears at the hamstring connected to the ishial tuberosity (pelvic bone) and also a possible labral rear around the hip socket. I’m mad I have to lead my own healthcare and that these specialists aren’t directing me on where to go to get answers. I’m taking my mri to pt at Methodist now. I’m sure she will want to continue to treat me even though I feel a sports medicine pt would best treat a hsmstrimg tear. These pelvic floor ladies can not even give me the injection of steroids into the torn hamstring that I need. They only do deep pelvic stuff. Why couldn’t someone in the pelvic pain management place suggest I get to an ortholedics guy??? Just on my own with my health I feel. Ugh. I do have an appointment in phoenix with hibner

        • I know, it’s so frustrating, when you feel like you just want to tell them “you’re the so-called pelvic pain specialist, you should be figuring this out.” I’ve also just had to take things in my own hands now. PT was the only part I liked at Methodist, but I can’t go back because I am so mad at everyone else. There is another group that does it, Peterson PT, but I haven’t tried them yet. I’m glad you were able to get some better answers and that you are able to see Dr. Hibner too.

          • Peterson PT is wonderful!
            Very compassionate, understanding and gets you feeling better! Love Julie

  3. I seem to fit the description of the PNE patient. However, I’ve been to many doctors, three Pelvic Pain doctors, one who performs decompression surgery. All have labeled me with PN. I am wondering if the patient with true pudendal entrapment would have rectal and clitoral symptoms too? I have neither. My pain is truly saddle pain, and left sided. I also have low back/ sacral pain on the left side. Like a typical PNE sufferer, PT didn’t work for me, long term that is. Meaning that initially I’d feel better as my trigger points were released internally and my muscles more relaxed, but the drive home ( sitting) would undo all her hard work and my symptoms would return. Does this sound like PNE? Also my symptoms began after vaginal birth and initially numbness was the symptom, gradually giving way to pain. I truly hope the doctors who specialize in PN and PNE can come together and find a successful treatment that is less risky than our current choices. I’ve been suffering for almost five years, and have lost everything except the roof over my head, even that is not guaranteed in the coming year. Please spread the word that we are really really suffering! Hopeful for things to come in the New Year!

  4. Dear Stephanie,

    Your most informative post with Dr. Hibner and Dr. Conway on Friday 20 DEC was thee best Christmas Gift we could receive. Most appreciated was Dr. Conway’s comment about the lack of validity of an MRN, and would humbly like to ask a question, because I am flying from Hawaii to California for a possible MRN on Monday, 23 DEC. In addition, we’d like to thank you for your life’s calling, where one of your students, Pelvic Pain Therapist/Kathy Ogino, learned your techniques, that she has superbly practiced in Hawaii on me. In November, she and you have been a voice in the wilderness for us, when there was NO ONE, where at times, I didn’t know if I could go on, due to the sleep deprivation which exacerbated the pelvic burning pressure/pain.

    BACKGROUND
    I am FM, 60 years, previous F-16 Isralie Program Manager, author, yogi, ballroom dancer, pilot and in love for 33 years with a Prince of a Man. In 1979 I was diagnosed with CFS/CEBV which spawned severe sleep deprivation; 1995 – chlordane/DDT poisoning/toxic encephalopathy and fibromyalgia/paradoxical affect with medications. My husband, a Viet Nam helicopter commander (Agent Orange and resulting consumption) and I had planned to move into a local new continued care retirement center in early 2012, which did not work out, thus leaving us nomadic for 2 years, and without our required regime of daily home saunas and yoga room, as well as tri-salts/powdered magnesium to relax/heal tissue. This set us up for a disastrous result.

    A year ago, while participating in a Queen’s Hospital Study for restless legs syndrome RLS, taking calcium lactate (which has a constricting affect), I had a diareaha reaction, that caused my 1st internal thromobsed hemorrhoid, located about 2” up in the rectal wall on the left side. The calcium lactate did eliminate RLS, but I slowly ceased it, because it created a raditating pain. I took aspirin and the hemorrhoid reduced, but the “pressure” and sometimes radiating pain remained, especially in April 2013 while having to sit Padmasana/lotus for 3 long days during a litigation event. Then the area burned so badly, radiating with pressure, that I thought I had cancer or something unknown. I do yogic inversions in the AM and PM, and they helped illiviate the burning, and I naturally reduced the internal hemorrhoid.

    A slight aching/pressure persisted, often irritated with sitting or standing; so to confirm I didn’t have cancer, I saw an internest, gynocologitst, gastro, and proctologist, who with a scope, conluded the rectal tissue was like a 25 year old with no problem. In desperation on the internet, I learned my symptoms were like Levator Ani Syndrome…it felt like sitting on a hot poker, like a spiked tennis ball is lodged inside, and I began to lose feeling sometimes in the area….it often feels like I need to defficate but there is nothing there….and the spiking feeling increases if I do need to go, but can’t.

    In addition to recommending you, Dr. Dellon stated that the MRN in Pasadena would be closer to me in Hawaii than the East coast or Las Vegas, and useful. On 12/12/13 at Hawaii Diagnostic Radiology, I had the 3-Telsa MRI SOFT TISSUE PELVIS FM WITHOUT AND WITH CONTRAST,read by Dr. Alice Smith/Radiologist, “ Pudendal Nerve & artery: left pudendal neurovascular bundle adjacent to the medial aspect of the left obturator internus and along the course of the alcock canal. Suggestive of pudendal nerve entrapment within the alcock canal.”

    Last week, local Dr. Jao/Gastroenterology stated that the thrombosed hermorroid clot should have been surgically removed to avoid calcification, which could cause innervation/irritation. In his physical examination, he thought he felt some calcification on the left side. Today, Dr. Conway stated that fibrosus can occur, as a blood clot resovles, and the nerve can be compressed. Since the condition is exacerbated mainly by standing, sitting or slow walking, I’m trying to relax the area and increase oxygen to the area by: stair stepping, a yoga practice designed by a reknown Iyengar therapeutic yogi to open this area, as well as some levator ani exercises my Pelvic Pain therapist has shared. I lay on my tummy at all times (like now typing) and/or do inversions or hang from a sling, which minimize the pressure/burning.

    Dr. Filler’s office stated this week (when I stated there was no place on the island to get a pudendal angiogram), that the MRN will show the pudendal artery. Once he sees me, he will confirm if I will proceed with the scheduled MRN.

    My QUESTION IS: In your estimation and Dr. Hibner’s and Dr. Conway’s experience, does it sound like there is a vascular component to my condition, given that I’ve had no bike/riding/child birth/heavy lifting, which are typical causative factors for PNE. Maybe an MRN is not needed, especially since Dr. Hibner stated that the 3 Tesla MRI is better than the MRN, and my insurance does not pay for the $2000 MRN. Dr. Alice Smith/radiologist/Honolulu said that the MRN was possibly a “patent” for periphery nerves; and Dr. Hibner said he and his neurosurgery colleageus all agree that they do not factor these MRN test results into their calculations in any way. Also, I do not know if the MRN is even in a format that other doctors could even anlyze or examin, and maybe you have insight/experience?

    Might a pudendal angiogram be a better next step, or at least a valuable additional step to help diagnose my condition, while I am on the mainland, since insurance will pay for it? If so, is there a place near LAX? Dr. Filler’s office knew of none.

    Dr. Jao/Gastro stated I should see a neurologist and get new medications for sleep to calm the nerves, since sleep does help a great deal; but that he was unaware of any good neurologist on the ilsnad, and it would be useful for me to see one, like Dr. Filler. Since I’ve not tolerated any medications for sleep or nerves in the past, this road looks dim to me, but he said there are new meds that are better.

    You have no idea how much your blog today meant to us, and we thank the generosity of both Dr. Conway and Dr. Hibner for the time to share their INVALUABE experience and insights, when there is great suffering.

    Mele Kalikimaka and Aloha, audrey decker-boznak

    • Dear Audrey,

      I’m sorry for all that you have been through; however, without evaluating you it would be irresponsible for me to give you specific advice on your diagnosis; I recommend that you see Dr. Hibner, who I believe can best help you.

      All my best,
      Stephanie

      • Thank you, Stephanie, for your response, which is so on target. Since writing that question to you before the holidays, and learning more through our research, we feel badly for even asking such a question, and so appreciate your understanding of we green horns beginning this journey.

        When I receive Dr. Filler’s summary, from my visit and procedure, which might a couple weeks, I’ll send any important findings that might help others. It was an unbelievable journey for us, to say the least; and it was beyond a pleasure to encounter such an expert and caring physician, as Dr. Aaron Filler. (he didn’t require his MRN, and accepted my 3 Tesla MRI done by an exceptional Honolulu retired LT COL and teacher at Georgetown U, Dr. Alice Smith/radiologist…we were told later this was the 1st time in his history that he did so, but it was because of this expert woman) 🙂

      • A year and half ago I had surgery to remove mesh since having a massive rupture and a huge clot lay in my abdomen and symptoms got worse,I really hope that I can get to Dr Hibner soon,I believe with all my heart from what I have learned about him ,he truly is an amazingly talented and caring Dr whom I know can help me get my life back,Thank you Dr Hibner and DrConway for your dedication in finding a cure .

  5. Hi this question is for the Doctors. I have been dealing with what my Doctors have told me is PN. It has been slow in coming on. My symptoms started after I fell really bad down a flight of stairs landing on my tailbone and suffering a concussion. I started to get bladder issues and urethra burning. I only got 10 times worse after I started an SSRI drug for anxiety, not sure how it made things worse but after I quit the medicine I started to get burning in the vagina, extreme urinary frequency, arousal type painful feelings in my clitoris and pelvic floor and rectal muscle spasms. I have had the 3 T MRI done and had them use Dr Hollis Potter’s MRI protocol and am still waiting on the results form that but have since gotten the results from my lumbosacral MRI and it showed Tarlov cysts.
    I also have visible varicose veins in my vagina and so my question is does it sound like I could have PN/PNE and also will this MRI show the Pudendal Vien and also could my vagina varicose veins be part of all this or causing this? Also why do you think it got worse with the use of an SSRI? I also have gotten restless legs as well that seems to be getting worse. I take 900 mg of gabapentin and it has helped me a lot but I still have symptoms daily and sitting makes it all worse. I live in Canada and it is hard to get help here for this as they don’t know much about it. Do you think the PMLT would help and how and where does one get this test done. Do you know of any Doctors here in Canada that are knowledgeable about PN/PNE? Also I had to pay for my MRI out of pocket here in Canada because they don’t have a 3 T tesla at the hospitals they only had it at this private Clinic in Vancouver, I wonder if they could reimburse me for this test as it was done to diagnose a medical condition which the Hospital couldn’t provide as they don’t have the 3 T MRI? Thanks for your time.

    • Dear Kellie,

      There is quite a bit of controversy regarding varicose veins and pudendal neuralgia. I feel that varicosities of the pudendal veins is and effect of compression of the pudendal neurovascular bundle and not a cause of nerve compression. This is based on operative findings where we’ll see the varicosities shrink after decompression, and my personal experience with the lack of efficacy with venous embolization for pudendal neuralgia. Also the vaginal varicosities may not be really related to the pudendal veins anyway. I doubt the vaginal varicosities are a cause of you symptoms. Dr. Allan Gordon in Toronto would be a resource for the treatment of PN. Also Dr. Phillip Peng also in Toronto is great for nerve blocks. It is possible that you can get reimbursed for the 3T MRI because it was not available in your area, but will require a lot of work from you and support from your local doctors. I don’t know why the use of SSRIs would increase your symptoms as I’ve never encountered that situation in my practice.

      All my best,
      Mark Conway

      • Thanks for your reply Dr Conway. I will contact those doctors by getting a referral from my GP. I am at the moment going to see a vascular surgeon for the vaginal varices. I also have what looks like on my pelvic 3T MRI is something they called pelvic congestion syndrome. I don’t know if this can cause pudendal neuralgia or my symptoms. I hope if I get the embolizaton of my left paraovarian vein it might lessen the symptoms some. Kellie

    • Hi Kelly
      I know your post was in Dec. 2013 however I just signed up with this website. I as well am from Canada. I am in Hamilton, Ont. Oh boy do I hear you when you say that no one really knows about PNE. I had to do my own research to find someone because my doctors here were not to familiar with this condition. My symptoms started from my hysterectomy. Been a mess ever since. Unable to work or basically live. On lots of meds etc. Well I did find Dr. Gordon at the Wasser Pain Clinic in Toronto.The doctor that Liz had mentioned to you in her response I just started seeing him in August. 4-6 mth wait. ugh!! However he knows everything about this condition. Have had my MRI and I am having an EMG this week. I also am booked for the pudendal nerve block and praying that it helps because I do not want to have the surgery. I hope you have spoke to someone here in Canada and you can message me if you want as well.

      Julie

      • Hi Julie. I actually am from Hamilton Ontario born and raised until we moved to British Columbia when I was 15. I still have not seen Dr Gordon but would like to. Its hard cause my Dr would have to get BC medical to cover the costs of my flight and stay. I am doing better with physio alone but I am Wondering how your doing and if your nerve blocks worked. Thanks kellie

  6. How long does a patient not respond to PT before it is suggested they have PNE? I at least have PN and have been getting regular PT, with little results or no results, for the last 9 months (I was actually getting worse for a while).

    I am desperate to get my life back.

    • Hello R,

      Unfortunately, a regular physical therapist cannot address your symptoms appropriately if your sypmtoms are related to PNE, or any pelvic dysfunction. Thus it is difficult to answer your question about a sensible treatment duration. I would recommend that you see a pelvic physical therapist who specializes in this field. Where are you located? I may be able to refer you to a therapist in your area.

      Best,

      Melinda

  7. I think we missed a lot about neurology. The classification of Selldon on injuries and neurological trauma may explain why a patient with a trapped nerve does not present much pain (Neurapraxia, Axonotmesis, Neurotmesis) and because a patient with PN without PNE can have a lot of pain.

    Today we know that Glia cells are responsible for inducing a response of pain secondary in other parts of body (legs and toes, feet). Already there are treatment options for people suffering from unilateral and distal lesions: PRF, cryoablation. We also have the protocol of Dr. Kirk Andrew, who has given outstanding results with ESWT (break scar tissue) and Laser. Much needs to be updated on treatments. Blocks with corticosteroids, for example, have caused very bad effects in some people.

    • Thank you Bruno, this makes more sense about the pain in my legs and feet, from PN and entrapment, the sacral nerve I am sure is also involved. I will pass this info onto my doctors.

    • Dear Richard,

      Are you looking for a physician or a PT?

      The PT we refer to in AZ is below; however, she is in Phoenix. Perhaps she will know of someone in your area or perhaps you can travel to see her for an eval.

      All my best,
      Liz

  8. I have recently been diagnosed with PN, following arthroscopic hip surgery. I’ve had 2 PN blocks which have relieved the pain, each time, for approximately 12 hours. Have you seen cases of PN/PNE following this type of surgery (the theory being that the post used during surgery to allow for traction could have caused trauma).

    Thanks.

    • Hello Margaret,

      Physiologically it is possible that traction from surgical positioning could occur. This does not occur in every patient undergoing hip arthoscopic surgery. Unfortunately, you may have been anatomically predisposed to react poorly to the surgical positioning. You will benefit from strategies to reduce neural inflammation, 1-2 nerve blocks, as you did, a physical therapy evaluation may help you understand why this occurred, and you may want to discuss a medication such as Lyrica with your doctor to avoid central senisitization.

      All my best,

      Stephanie

  9. I am concerned about trying botox due to a stage one cystocele/rectocele. Will Botox make this condition worse by relaxing various muscles?

    Thanks so much!

  10. Pingback:The BFF You Need To Meet: Pelvic Floor Physical Therapists | Doulaing The Doula

    • Can Pudendal Nerve Entrapment cause severe chronic pain? I’ve had severe chronic pain in my pelvic region for 2 years and was diagnosed with possible endometriosis. No endometriosis was found, but multiple adhesions were removed on my Fallopian tubes, ovaries, and outside the uterus. The pain got worse after the laparoscopy. Then I was diagnosed with Interstitial Cystitis, but after a cystoscopy the pain got worse and despite trying every treatment for IC, nothing has helped. Upon doing my own research, I realized the pudendal nerve is right where my pain is concentrated. I am in severe pain from an 8-10 every day, it has never gotten better, only worse. If it’s not PNE, what else could cause this much pain?

      • Dear Leilani,

        There are a host of musculoskeletal issues that could be causing your symptoms, it does not necessarily have to be PNE, even though as you mentioned you have symptoms adjacent to the nerve pathway. It could be that the muscles in the area are too tight and are irritating the nerve or there might even be trigger points in the area, so again, you should not jump to the conclusion that you have either PN or PNE. Check out the “female pelvic pain” section of our website here: http://www.pelvicpainrehab.com/services/female-pelvic-pain/ as well as other posts on the blog pertaining to pelvic pain for more information on what could be causing your symptoms. You might want to try pelvic floor PT also. Where are you located? Perhaps we can give you the name of a pelvic floor PT in your area.

        All the best,
        Stephanie

        • I have had pelvic physical therapy before. they don’t believe they can help me. injections help some. The injection site always hurts for about a day, so that takes away from any benefit I get. Should I go out of state and get the Pudendal surgery, No one in spite of my looking has been able to help me.I don’t even know what kind of doctor to see anymore. Please help me. Please tell me who to see. I can’t stand this pain much longer. I live in Ohio. I went to the Cleveland Clinic a few yrs. Ago had 2 pudendal injections in lower back, they were no help. also had a trial stimulator surgical in my back, it did not work, I had second pelvic surgery, no help, tens, drugs don’t help much. I have no clarity on where to go or what to do. I just suffer, and no one understands would a neurology doctor be able to help me?

          • Dear Linda,

            I’m sorry about all that you are going through. There are a few resources we can pass along to you: first, take a look at the International Pelvic Pain Society’s website:

            http://www.pelvicpain.org/

            this page will help you locate a provider in your area:

            http://www.pelvicpain.org/Patients/Find-a-Medical-Provider.aspx

            Also, we interviewed two of the top pudendal nerve specialists for a blog post on PN, please give the post (as well as the other two in the series: see below) a read: It might be that you would want to consult with either of these excellent physicians:

            http://www.pelvicpainrehab.com/pelvic-pain/1893/pne-your-questions-answered/

            and

            http://www.pelvicpainrehab.com/pelvic-pain/1901/pne-your-questions-answered-part-ii/

            The other posts in the series can be found here:

            http://www.pelvicpainrehab.com/pelvic-pain/726/how-do-i-know-if-i-have-pn-or-pne/

            http://www.pelvicpainrehab.com/pelvic-pain/744/the-role-of-pt-in-treating-pn/

            Lastly, don’t completely rule out PT. Not all pelvic floor PTs are created equal. This is a blog post that describes what we consider to be a good pelvic pain PT session:

            http://www.pelvicpainrehab.com/patient-questions/401/what-is-a-good-pelvic-pain-pt-session-like/

            and this one will give you some tips on finding a PT:

            http://www.pelvicpainrehab.com/pelvic-floor-physical-therapy/545/how-do-i-find-a-pelvic-floor-pt/

            All my best,
            Stephanie

          • There is no hope at all to fix this problem! I have tried medication after medication that is supposed to help redirect nerve pain. Tens units do not help. After a while they just increase the muscle spasms. I see a neurologist but it takes months to get in to see him. I’ve seen him twice since November 12, 2013 because he is so booked up. I suffer from numbness and muscle spasms and clitoral pain. Nothing helps. I’ve been doing PT but that made my hip hurt even worse and the stretching exercises seem to have worsened the problem even more. I can not sit but for a few minutes, can not stand because the spasms take my breath away. Sex is impossible because it causes more spasms! I don’t have anywhere else to turn and I don’t want surgery! I under went an abdominal perineal resection in Feb 2013.for rectal cancer and now have a permanent colostomy. Radiation and surgical scarring have taken over that area. Also the chemo I had caused horrible neuropathy! I give. I have no more strength to keep up any glimmer of hope. I pretty much just exist at this point which is pretty sad since I am 39 years old and should be enjoying life.

          • Dear Jeanette,

            I’m so sorry to hear about all that you are going through. Please do not give up hope; there are other options out there that might help you. Perhaps you might consider seeing either of the specialists interviewed for this post, either Dr. Hibner or Dr. Conway. Also, as for PT, it might be that that PT you saw was not a good fit. If you have symptoms of PN, stretching is something that might exacerbate the symptoms.

            All my best,
            Stephanie

          • Yes, the physical therapist thought she would only make me worse. and in fact after visits with her I did hurt worse. That is when the doctor decided the injections would help me more. I have four vaginal injections at one visit, weekly. Most of the time they give me great relief. It took me 7 yrs to find this doctor. She did try Botox once with no help, and the botox is very expensive, as I am sure you know. I get in a real panic when the injections do not work as well as they have in the past. I look forward to the few days of relief no matter how much it is. I take large doses of Gabapentin 600×4 daily. I also take vicoden 4 times a day. I am not proud of that, but my pain is great. One of my surgeons told me to do a morphine pain pump, so I figure anything would be better then that. My pain started after I had a vestibulectomy on one side of my body. I made the decision in haste and the doctor never said anything to me about the possibilities of pudendal nerve damage. I am so sorry, I was a healthy women. I just retired and was looking forward to traveling with my and playing with grandchildren. Now I do nothing, I don’t go anywhere. I have trouble getting my family to believe this awful pain. No one believes pain can last for over 7yrs. but I can tell you it can. I have tried everything it seems. I will do anything for help. Pudendal Nerve pain is life altering. Please women out there think twice before you have vaginal surgery.

          • I was diagnosed with moderately-differentiated adenocarcinoma of the rectum in October of 2012. I started 25 rounds of radiation and 3300 mg of a chemo pill called Xeloda a day. That continued until January 2 when I started developing neuropathy from the Xeloda. I started feeling like someone was prying my toe Nails off on my left foot. They stopped the chemo and continued the radiation until the next week giving me a total of 25 rounds of radiation. They gave me a few weeks to recover from the radiation and on February 18, 2013 I underwent an abdominal perineal restruction. They completely removed my rectal cavity and about a foot of my large intestine leaving me with a permanent sigmoid colostomy. When they started the surgery they had discovered that the tumor was growing outside my intestinal wall and into my vaginal wall. It was just a couple of millimeters from growing all the way through my vaginal wall and into my vagina. As a result they also had to remove part of my vaginal wall as well. About 8 weeks post-op they had me start another regimen of chemo because the tumor had metastasized. This time I did oxaliplatin via IV and 3300 mg of Xeloda. I would have one week off from all chemo then back at it again after that week. It would take them 9 hours to infuse the oxal because my body was so sensitive that I would have horrible pain in my arms, muscle cramps in my throat, hands, and feet. I couldn’t eat, drink, touch, or breath anything cold; and likewise with anything too hot. After 1.5 infusions my chemo oncologist refused to give me anymore oxal without a port. So I went and had a port placed. After that the infusions went a little quicker but the neuropathy became increasingly worse. Then it started affecting my heart. They decided to stop chemo with me still having 20 doses of the Xeloda left to go. I did OK for a while, as much as one could expect, until August. Then the muscle spasms started in my perineal area. I couldn’t stand or sit. I had to lay on my right side. I began to have what I call fireworks exploding in my legs and feet. Then like electric shocks going into the back of my head. My feet would burn one minute then loose all feeling the next. Next come the million bee stings feeling in my feet. I tried zonisamide. That gave me the flu like syndrome extremely bad. Then I tried lyrica. That just made me feel like I was going completely mad. Finally they put me on gabapentin 100 mg to start, weekly injections of vital B12, folic acid, and magnesium. I along take hydrocodone 10/325. They may as well be pez candy cause they don’t do ditty. I have a tenz unit that at first helped until I took it off, then the pain was right back at it. I am to the point that half of my vagina is completely numb while the other half is hyper sensitive. So they put me on Amitriptyline and valium. I started pelvic floor PT hoping that would help but it has only made things way worse. All day long I feel the spasms, shooting pain where my rectum once was and into my vaginal area. They have upped my gabapentin to 600 mg three times a day. I researched the pudendal nerve and found a lot of useful information to ask my doctor about. I see a neurologist and he is wanting to do botox. Honestly, I’m scared to death about it. I’ve had a facet joint injection into my left hip…NO RELIEF. The PT had me bringing my knees up toward my chest. I know that you can actually cause more damage by stretching the nerve. I am truly at a loss as to what to do.I want my life back! I know having the colostomy is there to stay and I’m OK with that. But every day my pain level is between 7 and 10 even after medicine. All I know is, it’s spring time, the bass are going to be spawning and I can’t sit or stand in order to hold the pole to catch them. Please help. God brought me through all this for a reason. And it wasn’t to be laying on the couch

          • Jeanette,

            Sometime I sit around and cry and be full of self pity. I read your story and I am ashamed of myself. I don’t understand the reason women have to travel to other states or countries to get help with Pudendal nerve damage or entrapments. Don’t doctors understand this is real and it takes our very life’s. Injection into the vaginal wall do help me. They use a numbing agent, the injections can be a little painful, but worth the total feeling of nothing you are left with. The duration they last differs, for me about 2 days. Botox did not help me. I was very disappointed in that, because they usually last longer. Maybe someday they will someone to help us. Lets not give up hope. It took me 7 yrs to find a doctor that gives me the injections. How awful is that.
            Linda

          • Dear Jeanette,

            I’m so sorry about all that you have been through and are going through. And that PT did not help alleviate your pain. It might be that your PT was not qualified. Not all pelvic floor PTs are created equal. Where are you located? Perhaps we can give you the name of someone else in your area.

            All my best,
            Stephanie

          • Linda I am from central Ohio and just starting my journey after a brief break to find a dr and ,,PT. Have you had any success since your post? Who did you see at Cleveland Clinic? I’ve seen hull and garge.

      • Leilani,

        In addition to Stephanie’s advice, another thing you might want to consider is having a laparoscopy with an endometriosis specialist. Many times the endometriosis is buried under the adhesions, and most doctors don’t have the technical skill or expertise to get to it. This is coming from extensive experience as an endometriosis patient. If you are on Facebook, there are two great groups: Nancy’s Nook Endometriosis and Discussion and Endometropolis which you can join to find a list of excision specialists. Many of them will look at your records for free to determine if they can help you. I hope you are able to find relief soon.

          • I have a neurologist..Lol…I’ve seen him 3 times since November. All he does is throw pills at me and talk about doing an ENG on me, whatever that is. I’m supposed to go July 3 for that test so he can determine if I’m having muscle spasms in my perineal. All I can say is REALLY??

            I’ve been telling him from the start that I believed my problem was with my pudendal nerve. I researched it fully! Every symptom that is listed for pudendal nerve entrapment or neuralgia is there!

            When they did my surgery they “carved” out my rectal cavity (that was the words my surgeon used). Those words made me think of a pumpkin being gutted with a tablespoon. I know they damaged those nerves. The pudendal nerve branches off in three directions and from there it’s like a web of nerves in that area.

            I experience urine incontinence, urine retention (I have to use the crede menuvour in order to empty my bladder) my neurologist says I need to Cath myself. I have a colostomy! What makes him think I want to Cath myself on top of changing a colostomy bag twice a day! I don’t have to worry about fecal incontinence because I don’t have a rectum anymore.

            I have muscle spasms in my perineal (the only relief I get is laying on my right side), I have shooting pains that go all the way up to my clitorous. My skin is hypersensitive to the point that I can’t shave my legs or even stand to use a wash cloth on my legs or my genital area. I have to use my hands to wash my lower body and my legs are looking like sasquach! And summer time is coming! I can’t even go swimming because I can’t seem to find a tape that is truly water proof! The last thing I want is to be swimming ad my seal break on my bag! If that were to happen I’d have to laugh just to keep from crying.

            But here’s one for ya…where they did the surgery to take the tumor out that had grown into my vaginal canal…I’m numb on the left side of my vagina yet my labia is painfully hypersensitive. On one hand, my pain down there is like a major toothache multiplied by a trillion, and on the other hand, there are places that are so numb that it’s like having 20 shots of novacaine in your mouth.

            The medicines they are giving me doesn’t help, they just make me feel weird like my head is in a fog. I’m taking 600mg of gabapentin 3 times a day, and hydrocodone 10/325 3 times a day (it may as well be pez candy cause it doesn’t help). Along with 8 other meds some of which include hormone pills because radiation in my pelvis sent me into early menopause. (The best part about that is I don’t have to worry about menstrual cycles or buying feminine hygiene products)

            I just want to be able to stand and cook a meal for my family, or take my dog for a walk, or sit down on the floor and play with my 8 month old grand-daughter, or have sex with my husband that is neither painful nor sensationless. I will be 40 years old in August, right now my quality of life is that of an 80 year old.

            BUT I HAVE FAITH IN MY LORD JESUS CHRIST!

            Philippians 4:13 “I can do all things through Christ which strengthens me.”

            Isaiah 53:4-5 “Surely He (Jesus) has borne our griefs. And carried our sorrows; Yet we esteemed Him (Jesus) stricken. Smitten by God (the Father) and afflicted. But He was wounded for our transgressions, He wad bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed.”

            I may have some really painful after affects of this cancer, but I’m alive! I was here to see the birth of my first grandchild, she is my blessing out of the trial, I married a wonderful man in February who stood by me through everything. I didn’t loose not one ounce during my chemo treatments because he was there to make sure I ate healthy and stayed as strong as I could. Even with the changes in my body, having my large intestine surface out of my tummy, he still sees me ad beautiful and attractive. I’ve seen my kids come to Christ. I watched as the doctors supposed that my mother had multiple myeloma, and all the tests came back negative for her! Truly, I am blessed beyond my disease! Honestly, I am happier than I’ve ever been in my life!

            My hope is not in doctors or medications, I’ve traded my hope in man for hope in Jesus Christ. No matter what happens, I’ll be just fine. 🙂

          • I love your attitude. I wish I had some of it. The injection I receive last about 2 days,I am not pain free, because the injections themselves are painful, and leave me with a headache and pain from the injection sites. I ask my Gyno last Friday if it was Pudendal Nerve damage, she said she didn’t know, but even if it was, I should not have the surgery to correct it, she said it was likely to make me worse, only 50% chance it would help me. I have another pain clinic she asked me to see. I take the same medications that you do. They do nothing to help me. My pain is back in its full glory Sunday morning until I get the injections Friday afternoon, I always think the office gets tired of seeing me.So goes my routine.

  11. I’m suspecting PN/PNE in myself likely as a result of a snowboarding injury (ignominious crash coming into the lift line, slammed down hard on my sacrum onto hard ice) about 4 years ago – my symptoms have come on somewhat gradually since (and only recently have I made the connection with this injury). At the time of the injury I had sacral soreness causing pain when sitting for 6 months or more, gradually reducing.

    My symptoms may have included some lower abdominal pain (medical) but this may have been stress related and it passed. More obvious has been genital numbness, some ED, some bladder pressure, and the sense of a foreign object on the rectum (no constipation). I do have some lower back pain but my pain level is mild to moderate. I get sporadic pain on my right leg, inside of thigh – typically just above the k knee but sometimes higher up; this symptom has almost vanished in the past few months.

    I feel like I have a point of pressure just behind my pubic bone, on the right side. This is usually moderate unless I lift something (and not what I would’ve once considered heavy, either, though my core definitely gets involved). If I do lift like this, I find that I get pain for a day or two, and ED is increased (doesn’t seem to respond to cialis), and I feel that my time flow is partially impinged upon.

    I had a couple weeks of severe pain a year ago. I thought it was a hernia; ultrasound and CAT scan were done with nothing at all found. Since then I found out about PN/PNE and realize it may be a good match.

    Any PT’s you could recommend in the Grass Valley, CA area? Seems unlikely… maybe more luck with Sacramento CA (1 hour drive)?

    Thanks!

    • Dear Nate,

      We recommend Risa MacDonald, PT in the Sacramento area. Her information is located below.

      East Sacramento Physical Therapy
      (916) 457-8802

      Best,

      Allison

  12. In Feb. Of 2013 I underwent an abdominal perinatal resection where they removed my rectum and part of my vaginal wall due to moderately differentiated adenocarcinoma. I had really no pelvic pain until August when I started getting what I can only describe as intense muscle spasms. The feeling of Carrington around a bowling ball where my rectum used to be. I would have stabbing pains located at the outside of my vagina and where the tumor used to be. That went on for a couple of months then disappeared almost entirely. Now it has started back with a vengeance and has been going on since Dec. The pain has progressed to shooting pain all the way to my citrus. And still the sensations of muscle spasms to the point that I cannot stand for more than a couple of minutes without have to sit and lean back putting the pressure on my tailbone to lower back to help alleviate to pain or rock back and forth. That is not helping now. The only relief I get is to lay on my right side with a pillow between my knees. Being on my back doesn’t help, sitting is near impossible. I’ve tried all the meds, they do not help and the side affects cause more problems than is worth. I have a ten unit that eases the pain to a point until I take it off, then it’s right back. I have trouble draining my bladder and have had several recurrent bladder infections in just a few short months.
    I’m at my wits end. My doctors are talking about different tests that involve needles and electric current, and botox, and nerve blocks. All of these things are months off since my neurologist is heavily booked all the time. What can I do to get by? I’m a mother of 5 (three of my own and two step children) and I just became a grandmother. I’m 39 years old and with all this pain and the inability to get around and do everyday activities, life seems pretty dismal at this point. Please help. Thank you for your time and God bless.

    • Hi Jeanette,

      I’m sorry you’re in such pain. Have you seen a pelvic floor physical therapist? If you haven’t I would absolutely start there before considering anything more aggressive like botox and/or nerve blocks. It definitely sounds like you have some muscle dysfunction in your pelvic floor and/or your abdomen and pelvic girdle. If you’re symptoms are due to muscle dysfunction a good pelvic floor physical therapist should be able to help. Please let us know if you need a referral to a physical therapist in your area. I hope you find some relief. Good luck.

      All my best,

      Liz

  13. I am 60 years old, with PN (and possible PNE). With my history of severe vulvar and lower extremity varicosities, and significant pelvic varicosities on my MRI, I’m wondering if those varicosities could be causing PNE. Does anyone ligate or embolize the pelvic varicosities, or do that along with therapeutically-intended corticosteroid nerve blocks?

  14. I had a vestibule surgery in 2002. Since that day I am in pain.Been told by many that I have nerve damage . either entrampment or damaged.I have physical therapy,interstem, tens. Right now the only thing I have found that helps me are 4 injections given vaginally once a week.sometime they help a lot some time not as much. I do have some injection site pain for about a day, in injections last for about two days.that awful burn goes away for a little while.I usually feel like there is something in me.In my body. It can be stimulating after days and days but you try to ignore it, or you will burn awful. I was told there was nothing left for me to do except get these injections . The Botox injection did not help and was expensive.Is there anyone who you think could help me Should I see a neurosurgeon .I was a healthy active senior citizen that had just retired and looking forward to the rest of my life. now I am 69,I am living with terrible pain. I keep on looking for help

    ann

  15. I’ve been diagnosed with Pudendal neuropathy. Next week I’ll have a nerve block. I was diagnosed with Crohn’s 32 years ago, had prolapse surgery last summer, was diagnosed with IC and PFD in January. After 2 months of pelvic floor therapy, the obturator still couldn’t be released even though all the muscles improved dramatically. Since I have other auto immune diseases, could this be my immune system attacking my nerves?

    • In ohio, I am 69 fm, had a vestibulectomy 7yrs Ago. I was in pain before my surgery,but nothing like what. I am living with now. I could tell something was wrong right away. I have many doctors and pt,injections, I found a doctor who gives me vaginal pain injections weekly,I am getting 4 done at a time. I get about 2days of relief.sometime the injection sites take a day off my relief period, I never know. I usually get a migraine that doesn’t help. I have been getting these injections for 6 months now. I am thinking my body has had enough. I am scared to leave this doctor for fear I will have no one. I am really lost. One doctor told me to get a morphine pump for my pain. It has truly taken my life away from me. I don’t really know what I should do.at my age should I just go on or keep looking. I think. I am running out of time maybe. After 7 years can anyone help me? I truly believe pain is taking my life. How can I see doctors so far away for many appointments. How do I start. I am afraid. It sounds very expensive. Does Dr. Hibner accept medicare? Will he just see me?

      Linda

      • Hi Linda,

        You will need to contact Dr. Hibner’s office for insurance information. Also where in Ohio are you located? I may be able to recommend a local pelvic PT.

        All my best,

        Stephanie

  16. Hi,
    This is Rajeev from Mumbai, India. First of all thanks for creating this great website for pelvic pain. Below is my query.
    Post repeated urinary tract infection last year, I suffered from frequent urge to urinate with right side low back pain relieved partially after voiding.Pain in right foot which has improved. Also, there is pain around tip of penis, behind scrotum & bottom of right testicle, back of right thigh on sitting for long. Sometimes while voiding after sitting for long there is tremendous pain in the above mentioned areas. Also, I’ve got constipation problem, hemorrhoids, tingling/burning flame like feeling in right/left toes, around left knee, ankle, arm and numbness on left large toe only. Anal muscles contract on its own and there is spasm as well. There is pain in lower back while sitting, pain in above mentioned areas and in right buttock, near anal region and almost entire right thigh, hip worsens after every bowel movement.There is pain in right heel while walking. Sitting/walking/standing for long is difficult. There is dyspareunia as well. Drs here don’t know much, some Drs are telling it is CPPS with overactive sympathetic nervous system and some are saying there is issue with lumbar sacral plexus with pelvic floor dysfunction and possible involvement of pudendal nerve. It would be great if you can help me with following queries as this condition is curse;
    1. Do you have a centre in Mumbai or India or do you know any associate in India or Mumbai who can help me with, as PT whom I have contacted in India unfortunately do not deal with such Pelvic floor/PN issues.
    2. Based on my symptoms can you tell me whether it is pelvic floor dysfunction as symptoms are mostly unilateral/ CPPS or Pudendal neuralgia/or PNE issues.Cushion provides some relief. Pain level would be 2-3/10 while sitting and 4-5/10 after bowel movement. Gabapin NT, Eliwel 10 is helping somewhat.
    3.Can you or Dr. please guide me on this?
    4. Is it possible for you to have some program or sessions in India on pelvic floor/PN assesment as there are many in India suffering from these issues due to hectic lifestyle but no one is getting proper help.

    Please do let me know if you need more information. My apologies for this lengthy post.

    Regards,
    Rajeev

    • Dr. Rajeev,

      I’m so sorry about all that you are going through.

      To your questions: I’m sorry, but we do not know of any PTs or physicians in India who can help you, and unfortunately we do not plan to teach a class there in the near future. And I’m also sorry, but I can not give you any sort of diagnosis just based on your symptoms. I would have to evaluate you in person for that. Again, I understand your frustration.

      All my best,
      Stephanie

  17. I was diagnosed with IC and vulvodynia 10 years ago but it has been under fairly good control until 5 weeks ago. I went to a new doctor when my current doctor left her practice. At the new doctor’s office a young nurse tried to catheterized me for a PVR. She could not get the catheter in but kept trying. The pain afterward was so severe I could hardly sit on the treatment table. Then the doctor came in and did a very aggressive exam. I thought the pain would calm down after a few days, or with using a Valium suppository, however, it did not. I tried to work for a week, but the pain was so severe, I could not continue. I have never missed a day of work for pain before and I was on medical leave for 4 weeks. With rest, change in diet, Valium suppositories, Cymbalta, manual soft tissue techniques, and yoga I was able to get my pain level down 30%. I was fearful of losing my job, though, and went back part time. I have a 40 minute drive and it is excruciation. I can sit on a cushion for short periods only. I am not sure what to do and afraid of further injury if I am treated by someone not knowledgeable enough about this problem. There is a doctor here who does pudendal nerve blocks and cryoablation, but he does not do a thorough work-up like described in your article. We also have a doctor who does Botox injections but she is the one who hurt me. Any suggestions would be greatly appreciated.
    Thank you very much and thank you for the work you do.

    • Dear Susan,

      I’m so sorry to hear about all that you are going though. Half the battle for so many of our patients is finding providers qualified to treat pelvic pain/pelvic floor dysfunction. A couple of resources that I would recommend for you in your search for a provider: http://www.pelvicpain.org and also we wrote a blog post with tips on finding a PT, you can find it here: http://www.pelvicpainrehab.com/pelvic-floor-physical-therapy/545/how-do-i-find-a-pelvic-floor-pt/.

      All my best,
      Stephanie

      • Thank you for your response, Stephanie. I appreciate the time it takes to keep up with questions.

        I have been very fortunate. Since I wrote, I have continued resting, stress management, slow flow/gentle rejuvanative yoga classes 3x/week with a great teacher, external manual P.T. Techniques on myself (I am a P.T.), use of the cushions you recommend for sitting, and eating an anti-inflammatory diet. It took about 5 or 6 weeks from the onset of the flare to calm down, but I am about 75% better now. Valium suppositories and Cymbalta have been a big help also. I think my central nervous system is just very sensitized. It has been a particularly hard year with the illness and death of a parent and many stressful workplace changes along with pursuing an advanced degree.

        I think I will be ok. I am being diligent with continuing the things that have helped to calm my nervous system down, gradually increasing my hours at work slowly, and gradually increasing my activity outside work slowly. Just a few weeks ago I could not sit for more than 20 minutes and last week I sat at a friend’s birthday party at a restaurant for two hours.

        So to any others sufferers reading this, there IS hope. Do not despair. I am using the new insights I have gained from this experience in working with my patients and there are many very skilled and compassionate therapists, doctors, and people in other health disciplines out there.
        It can be challenging to find them, though. I was blessed to have the right training to have found a good formula for myself, but as you can tell from what I wrote, I too felt a little panicked when it looked like things might not change. I am still recovering and will have to continue working at taking care of myself to maintain good health, but I think perhaps things may be ok.

        Thank you again, Stephanie, and thank you for all of your hard work in this much needed niche of physical therapy. I talked with you once before when you were coming to PA to give a course, and you are consistently kind. Kindness means a great deal to those of us who are hurting and afraid.

        Susan

  18. Dear Stephanie,
    I am located in Cookeville, TN. My gyno had referred me to a facility here and while the lady was super sweet, she was having to refer to a book for exercise techniques. I guess that should have been a red flag but I thought surely she knows what she’s doing. She had me doing stretching exercises that brought my knee to my chest and so on. After the 4th visit my pain level was through the roof. My NP tried a facet injection in my hip hoping that would be it but not so much. My insurance covered me for 8 visits and to be honest I have a hard time getting coverage for a lot of things. My gyno told me I’d just have to learn to live with it. Wow! Really?

      • I was afraid of that. My only and best alternative is to keep looking up to The Great Physician and Healer. Thank you for trying.
        Best Regards,
        Jeanette

      • Stephanie,
        My neurologist did put me on valium for the muscle spasms which I take orally. They do not give any relief just make me sleepy. 5mg per tab and I can take up to two. I also take 50 mg of amitriptyline and 600 mg gabapentin 3x a day. Do you think the valium suppository might work better?

        Jeanette

        • Hi Jeanette,

          It’s hard for me to answer this question. Everyone is different and reacts differently to medications. But, I have had patients who have used valium suppositories and have found relief with them.

          Best,
          Stephanie

          • The valium suppositories help a little. I can’t use them during the day, they are messy. I use one about a hour before I go to bed. They do make you sleepy. Be sure to time the drugs before you go to bed. Don’t take everything at once. Could be to relaxing. That would not be good.

            Linda

  19. P.S. my doctors drive me crazy! I’ve been doing the research on all this pain, urinary retention/incontinence, and muscle spasms. It’s like I’m having to guide them to do their jobs. They have no clue. I’ve been telling them for months about the pudendal nerve symptoms I’ve been having, finally on may 14 I get my pcp to print outa diagram of the pelvic showing the route the pudendal nerve takes. He jots down a few scribbles and tells me to show it to my neurologist. Ha! Who then says maybe we should set you up for a emp, whatever that is, and mumbles something about botox. Wow! I thank God everyday for my faith and hope in Him! Otherwise I’d probably be an extremely angry, hostile, and sleep-deprived person!…well I’m still sleep-deprived…lol it’s really not funny but if I don’t laugh, I’ll definitely cry, or scream, or both!

  20. Hello Stephenai:
    This is so wonderful that are taking your time every day to help. I have been diagnosed with pudendal, priformis, and now PFCN and hamsring tendosis. The questions remains who to clear distinguish that both PFCN, priformis and pudendal?
    If yes, do people get the PFCN remove and have numbness down the leg or find a doctor who cuts posterior of PFCN that has connection with inferior cluneal to release the rectal pain.
    Have you heard anyone got succes with PFCN surgery and how th life is after PFCN + priformis surgery? If you do know or remember please let us know. I am a Professor at GSU and suffering from this nerve pain for 7 years now! It is like slow death sentence that I do not want to take.
    Best
    Shahab Shamsi

    • Hi Shahab,

      No, patients who have PFCN pain do not get the nerve removed. The correct treatment is usually a combination of manual therapy to the surrounding muscle and tissue in conjunction with a nerve block.

      There is not a surgery specific to the PFCN. I’m not sure what you’re referring to. As far as a surgery for the piriformis goes, there are some surgeons who ‘release’ or cut the piriformis, but I would strongly caution you with that procedure.

      If you haven’t sought the help of a pelvic floor physical therapist in your area, I would strongly suggest you do so before seeking a surgical solution.

      Best of luck,

      Liz

  21. I had a robotic abdominal y graft mesh surgery in sept 2013 to correct a bladder and bowel prolapse and partial hysterectomy. I slowly began to have severe pain and irritation as the day progressed with increased activity and could no longer sit a month after surgery. After trying numerous drugs the doctor decided to go back in surgically and release the mesh hoping this would stop the pain. After a couple of months and with twice weekly pt a had some relief but never a day without pain. I was about 70% improved with the ability to sit and was able to increase activities. After a period though I had a set back and am no longer able to sit or do much again without a lot if pain. My question is is that if you have some improvement does that rule out pne and is it ever recommended to have all the mesh removed? I am worried about more problems by doing that but the doctor is suggesting that as an option. Thank you !

    • Hi Megan,

      I would absolutely suggest you have the remainder of the mesh removed. In cases where a patient wakes up from a surgery like that with pain, very very often it is due to the mesh. PT is often not very helpful in this type of situation. Most likely a nerve is caught in the mesh. That doesn’t necessarily mean you have PNE, but a nerve is likely stuck or entrapped in the mesh or the scar tissue that has formed around it. The difficult decision is not to have the mesh completely removed, but who to do it for you. There are not many surgeons that are very experienced or skilled at that type of surgery. I would recommend that you contact Dr Michael Hibner, if you live closer to the west coast, or Dr Mark Conway, if you live closer to the east coast. These are the two surgeons in the US who have the most experience with PN/PNE and surgically removing mesh. Hope this helps.

      All my best,

      Liz

  22. There is no cure for this “disease” so why do women continue to pour out money only to become worse with every surgery, every medication that does not work, all the numerous Doctor’s we go to who don’t know what they are doing? My life has been ruined by PN—you can’t talk it away, you can only cry out to God for some relief. So many people, even professional do not even believe you have what you say you have! So many have made it worse! Each Doctor sending you to another! I have become “recluse” trying to survive on ice packs, cushions, etc. especially God! I have no life! I pray every night “God, just take me home!” I am just going to stop reading all this paper work and forums and all the misery and suffering they contain! I will hang on and pray for an early death!!
    trishj46

    • Dear Patricia,

      We are sorry to hear about your situation. There are a lot of treatment methods that are proven to help patients who suffer from PN, even if it sometimes requires a lifelong management program. Physical therapy is one of them. Have you received treatment from a qualified pelvic floor physical therapist?

      All my best,

      Malinda

  23. I had pelvic reconstruction using mesh and a partial hysterectomy almost a year ago. I have been in PT for 7 months, tried gababentin, and a trigger point injection and have made some improvements. My question is this if it is PNE from the surgery would you see improvements? I seem to go 2 steps forward and then take a step back. trying to figure out if it is PNE or Pn is very difficult for me. Following the surgical procedure i was in pain because i had alot of things repaired but not terrible pain so I am trying to figure out if pain came on gradually or not. Thanks for your help.

  24. I already have Interstitial Cystitis and bladder prolapse. I was just diagnosed with Pelvic Floor Tension Myalgia most likely from two falls on my tailbone at the end of 2013. In addition to super tense pelvic floor muscles, the tension has caused terrible clitoris pain. I started rectal Valium(5mg)/Baclofen(4mg) suppositories twice a day about a week ago. I don’t expect (but wish for)a miracle, but the clitoris pain is just as bad as it was before. I was just wondering how long it takes for the suppositories to relieve the tension enough so the nerve in my clitoris stops hurting. I know no two patients are the same, but since I was given a 30 day prescription, I was wondering if that’s the minimum amount of time for the medicine to even start working. I am so grateful for your help.

    • Dear Shannon,

      I’m so sorry about all that you are going through. But, I’m sorry, I simply can’t answer your question. For your history, I will say that I think your best course of action is to take a multidisciplinary approach to treatment, including getting an evaluation from a qualified pelvic floor PT and also visiting a physician who specializes in pelvic pain. Where are you located? Perhaps we can recommend a PT in your area. Also, the International Pelvic Pain Society has a provider resource here on its website to help you find a physician who specializes in pelvic pain: http://www.pelvicpain.org/Patients/Find-a-Medical-Provider.aspx

      All my best,
      Liz

      • Thank you so much for replying so quick! I live in Yuma, Arizona, where there are no pelvic floor physical therapists. I was thinking of going to the Scripps Hospital La Jolla Pelvic Floor Physical Therapy. I have had good luck with doctors at various Scripps hospitals in the past, but have found no reviews on their pelvic floor therapists. If you are able to help me find one in San Diego or Phoenix, I would be so grateful. I am super overwhelmed with it all right now. And again, thank you for all that you do.
        Shannon

  25. In trying to figure out PN or Pne if you have gradual improvements would that mean it is PN? I had abdominal surgery for a partial hysterectomy and bladder and bowel repair with mesh a year ago. I didnt wake with excruciating pain but was slowly unable to sit with out delayed pain following the recovery period. i have been in PT 1 to 2 times a week for 7 months and am about to get a 2nd steroid injection. I have had many ups and downs but am able to take long walks and stand but can not sit with out vaginal and rectal pain, some pain after bowel movements and delayed pain after sex. It all points to some PN but have improved from spending days in bed to being up and out all day taking care of my 4 kids just have to limit sitting. Any help with PN or PNE is grateful my anxiety and hope are up and down along with recovery. Thanks!

  26. iam a 62 yr old retired nurse, retired due to the fall that landed me right on the pudendal nerve route in buttocks..this fall took place in 2102, just seemed to be regular bruising, etc., except over the next few months I developed many new sensations to all my bottom parts, first bladder-like spasms, on to shooting pains, and finally inability to sit due to painful burnlike sensations…found some knowledgable docs in Houston, TX last august 2013…saw Dr. Charles Popeney, an associate of Dr.Renney, who took a crew of surgeons to Paris, France to learn the art of surgical decompression of the pudendal nerve…my diagnosis was positive for entrapment. my quality of life is near zero, constant pain, spasms, just returned from local ER because of bowel problems. my pelvic floor muscles are so weakened that I can barely pass stool, and with great difficulty, despite all the helpful softeners available…i am afraid I shall hear the word colostomy at some point…i have not been surgically screened yet…you see, my home is in Memphis, TN, and I have no doctors here that seem to realize this condition exists…what can I do???? how can I avoid further unacceptable conditions to manifest, and can I recover my muscular ability to do normal body functions? I am truly desperately seeking an answer…I will do anything to get my life back, even a little!!!!!PLEASE, I beg you to help me!!!sincerely, nancy tice, rn

    • Dear Nancy,

      Hi Nancy,

      I’m sorry you’re in so much pain. Unfortunately this is a story we hear way too often. However, there is definitely hope! You likely just need the right treatment plan.

      I have a few questions. Have you seen a physical therapist who is skilled in treating pelvic pain? If not, you should. What did Dr. Popeney do for you? Did he perform pudendal nerve blocks? I know the Houston folks are not currently performing the decompression procedure, but if indeed you were a good candidate for the surgery, I would absolutely refer you to one of two other surgeons who are the leading PN decompression surgeons in the US. One is Dr. Mark Conway in NH, and the other is Dr. Michael Hibner in Phoenix AZ. I recommend them equally, it just comes down to who is easier to travel to. However, if you haven’t gone through a thorough physical therapy treatment program yet, you should absolutely do that before considering surgery. A vast majority of people do not need that surgery and do very well with conservative treatment. I can recommend one PT in TN that I’ve known for years and absolutely trust. Her name is Melissa Kubic. She’s in Chattanooga. Her phone number is (423)778-8660.

      I hope you get some relief soon. Good luck.

      Best,

      Liz

  27. My name is Rachel Moore and I have been diagnosed with severe pudendal neuralgia, urinary incontinence, and suspected pudendal nerve entrapment. I am 20 years old, got married Jan. 7, 2013 and second week in Feb. 2013 I found out I was 4 weeks pregnant. I was 95 lbs when I found out, 125 when I gave birth to my 8 lbs son Oct 2, 2013. my doctor gave me an appesiotomy, but I still got a first degree laceration, and a second degree laceration. Two days later they noticed a GIANT, painful hematoma had formed due to internal bleeding. I spent 1 week hospitalized and for 6 weeks could do nothing but lay flat on my back. I am now 11 months postpartum and I can’t sit at all, it’s too excrutiating. I can’t have sex with my husband, and my pain is at such an extreme level that I don’t know how anyone can live like this. I have gotten the same diagnosis from my OB gyn who delivered my baby and continued to treat me continuously after, and my PT who specializes in pelvic pain and is very familiar with PN. My PT suspects scar tissue fibrosing my pudendal nerve due to the traumatic circumstances of childbirth. My husband and I were just starting out, I can’t work because I spent most of my time crying in pain and yet still have to take care of my child. I have no money, as it stands we can only afford to pay a portion of each of our bills each month. My question for you is, how does someone like me get help? Im on the Oregon Health Plan- state funded insurance because I can’t afford anything else. Even the visits I’ve had with my PT are limited to the few she can donate as charity allowed by her manager. I can’t live like this forever, as it is, I’m not living now.. I don’t wan’t to lose my husband; my family, or worse.. I am very scared of what this means for my future being in oregon, and having no money, no assets. What can I give to convince someone to help me get my life back? This pain is completely debilitating as it’s so bad I can only stand or lay, and the pain is never-ending. Please someone, anyone tell me you know something that can help.. please, I am desperate..

    • Dear Rachel,

      I’m so sorry to hear about all that you are dealing with. Our former therapist Marcy Crouch, DPT is now treating patients at the Women’s Health Center at OHSU in Oregon. I would recommend contacting their center for treatment. Their information is below.

      OHSU Center for Women’s Health
      3181 S.W. Sam Jackson Park Rd.
      Portland, Oregon
      (503) 418-4500

      All my best,

      Stephanie

      • Hi Stephanie
        I had a vaginal hysterectomy in June 2013. Been a mess ever since. I have just stared seeing Dr. Gordon at the Wasser Pain Clinic in Toronto. How can I prove that this was caused by the hysterectomy? My life has been taken away. I cannot work and am on Disability. I was told that a normal uterus is approx. 70 gr. Mine was 260 grams because of a fibroid tumor. I signed a consent prior to the surgery to give permission to cut along my abdomen if necessary. For some reason she did not. Because of this I feel that due of the size of my uterus this has caused the damage from pulling out the uterus and its size. Sorry for the details. Please advise.
        Thanks

        • Hello Julie,

          I would recommend that you seek a second opinion from a second physician. A pain management doctor may also be a good option for you.

          All my best,

          Stephanie

  28. My question is in regards to my husband. Jim is 56 years old and has been dealing with a diagnosed PNE since January of 2010. He started after a second prostate biopsy. His first indicated pre-cancer, and it was repeated several months later. They initially treated prostatitis with no relief. The pain continues to increase. He is unable to sit, standing for more than a half hour causes electrical shock type pain in his feet. He has extreme pain with bowel movements and erections. The pain is straight up between his legs with pain on both butt cheeks close to the rectum. He saw Dr. Antolak in St. Paul early in his treatment. He had several injections with him over a period of a couple of years. Relief was very temporary, lasting a matter of a few hours. Sometimes the injections seemed to give minimal relief several days after. He has seen Dr. David Stude (chiropratic and sports medicine) in Minneapolis for trigger point release. He has tried acupuncture, physical therapy (with some noticeable relief), and Jim has taken every type of medication for pain. They do not relieve the pain, but makes him “not care.” (His words) Dr. Antolak has retired, but mentioned Dr. Conway as a possibility for Jim, as even the last time we saw him he didn’t think he could perform surgery if that was Jim’s decision. We have heard of a study on the east coast where they are trying laser to deaden nerves. We’ve never tried botox and are wondering about that. Jim is past desperate. He spends 99 percent of his time in bed. The only relief is a night’s sleep. As soon as he bends to tie shoes, has a bowel movement or is up for any period of time the pain stays with him and increases until another night’s sleep. What would you recommend? We live in Fargo, ND. Are there PT’s or specialists in PN or PNE in our area that you are aware of. We are currently seeing a radiological interventionist that has given injections with a numbing agent that gives Jim relief for a couple of hours. He needs a break from this pain and feels he’s at the end of his rope. Please help us.

    • Hi Nancy,

      I’m so sorry that your husband is in so much pain. Without evaluating him it’s nearly impossible for me to make suggestions as far as treatment goes. Botox is a valid treatment option for the right patient. I wouldn’t know if that would be a good treatment option for Jim without completing an evaluation. I’m not sure what the laser treatment for nerves is…unless it’s pulsed radio frequency. That may be it. Again, it can be a useful treatment strategy for the right person.

      If you want a second opinion on the pudendal nerve decompression surgery, Dr. Conway is definitely your best option. You could set up a phone consult with him to discuss your husband’s situation.

      As far as PTs in ND, I only know of one is Bismark, April Nesham at CC’s Physical Therapy.

      If we can do anything to help, please let us know.

      Best,

      Liz

  29. When do you know for sure that you should have pudendal nerve entrapement surgery. I have been DX with pudendal nerve entrapement but I read about people who are in terrible terrible perhaps worse than me. I have also heard the pain can get worse and I am scared to death of the pain after surgery. So when do you know for sure that you should go forward with surgery. I had a mesh that caused pain immediately after surgery and was removed a year later. Now I have pin every day some real bad some not please help!!

    • Hi Halley,

      A pelvic physical therapist is able to determine the source of your pain only after he/she internally evaluates your pelvic floor muscles. Only after an assessment, will your therapist be able to discuss treatment options based on their findings.

      All my best,

      Allison

  30. okay what is she told me that my muscles or so tight from spasms she couldnt even recommend pt or Botox until the nerve was taking care of does that tell me I should have pudendal nerve entrapment surgery

    • Hi Halley,

      I would advise that you seek a second opinion from a pelvic floor PT. Where are you located? I may be able to recommend a therapist to you.

      Best,

      Melinda

  31. Ok but the PT I saw sees lots of patients what she said is that my muscles were so much in spasms and that the pudendal nerve was causing this in her opinion.she said before any thing could be done the nerve would have to be addresses otherwise the nerve would continue to cause the spasms. Has other heard of this? Has any one been damaged by a mesh product?

  32. I see that you suggest PT for almost everyone but what happens when a very well respected PT says the Treatment you have had was the worst thing for you? I was told the therapies I was told to do we’re the worse thing I could have done for the pudendal nerve. Also I have good days and really bd days. I just want to make sure that surgery is the correct next step for me. I do know recovery can be about 2-3 years. That is a very long time to someone who has already been in pain and laid up close to 3 years already

  33. I would be happy to met with you. I am here in Sioux Falls what kind of medical issues do you have? Just let me know and perhaps we can meet up.

    • I have endometriosis, chronic pelvic pain, and am post hysterectomy. How would you like to get in touch? I would rather not post any of my contact info on an open forum.

  34. No, I’m a patient. I’ve been dealing with these issues for several years now. I would love to have a pelvic pain support group in Sioux Falls.

  35. Sarah, I would love to meet you. Sorry I haven’t gotten back to you sooner. I have been in tremendous pain and pretty much unable to move! I don’t know your schedule but perhaps we could meet at a local resturant or perhaps the mall and just talk. Let me know what you think. I agree about keeping personal info personal.

  36. I am a 65 year old male who has had pelvic pain for about 5 years.. It is
    symmetrical (both sides of butt)in the area of the obturator externus. Pain resolves on standing and sitting on toilet. Certain chairs that are sculpted to relieve pressure (bar stools) in the center are tolerable. The pain can best be described as aching or cramping. I have had two mri’s of pelvic area. Both normal. Have not had a 3t MRI. I have tried meds, (Lyrica, Cymbalta, rectal Valium). Had ischial bursitis injections (bilateral), acupuncture and one Pudendal Nerve block (both sides). Also have had pelvic therapy with 3 different therapists. No other symptoms (sexual or urinary) other than pain when sitting. Do you have any suggestions as to who I should see for a diagnosis and further treatment options? I can travel anywhere. Thank you. Jim

    • Hello Jim,

      Where are you located? We may be able to offer a therapist recommendation. In addition, we can also schedule a complimentary phone consultation if you are interested in our out of town program. Please contact our office for more information at (415) 440-7600

      Regards,

      Allison

  37. Hello,
    Thank you for having this blog! I live in Denver, Colorado and am trying to narrow down by diagnosis. I have seen many doctors and the diagnoses that have been considered are pudenda neuralgia, piriformis syndrome, SI dysfunction, facet joint syndrome. Is there an expert here in Denver (physician) that you would recommend to help me diagnose the PN? If not in Denver, someone in a nearby state? What about a pelvic floor physical therapist with expertise in PN?

    Sincerely,
    Pam

    • Hello Pam,

      Yes there are! Here’s their information:

      Hollie Neujahr, PT and Terri Nishimoto, PT
      Nishimoto & Neujahr Physical Therapy
      Denver CO
      (303) 260-5092

      Nel Gerig, MD
      Denver Urology Clinic
      Denver CO
      (303)388-9321

      Best,

      Mark Conway, MD

      • I am trying to find a good PT and or doctor in NJ does anyone have any contacts? I know there are some in NYC but i can’t sit for long periods of time to travel too far. Thanks megan Sitar

        • I meant to add I could see someone in NYC for initial help but would not be able to seek treatment there on a weekly basis until the pain with sitting gets better. So any referrals to either place would help. I too am so grateful for this blog!! It gives me hope and i don’t feel so alone with this pain that I’ve suffered with for a year and a half. Thanks megan

          • Hello Megan,

            Here are a couple of therapists we recommend in NJ.

            Nancy Ely-Maskal, PTA
            Physical Medicine and Rehabilitation Center
            Englewood NJ
            (201) 567-2277

            Niva Herzig MS,PT
            Core Dynamics PT
            Englewood NJ
            (201) 568-5060

            Regards,

            Stephanie

  38. I have PN or PNE not sure which from vaginal childbirth in May 2012. I feel very alone and very angry having this happen to me. Women give birth everyday and have since the beginning of time yet I have never heard of this type of damage occurring. The obgyns I’ve dealt with apparently have no knowledge. How can doctors not be familiar with this major nerve especially obgyns. I was brushed aside and told the pain was normal and I would heal. Now almost 3 years later it’s continually gotten worse. Are there any doctors in or around South Carolina that can help me? I have been researching for so many months and I can’t find anyone that is not across the country. My husband and I can’t pick up and move states away for me to get ongoing treatment for the rest of my life. What do people do when there’s no one to help them? I’m terrified of living the rest of my life like this. I’m only 33! This should not happen to a woman who gave birth to a 6 pound 4 oz baby. I have always felt there was neglect on the physician’s part for not doing a c section and allowing me to go on pushing for hours. I have never heard of this happening to any other mother. It’s not in any of the baby text books to warn women of this horrible thing that could happen. It’s only been since the birth of my child that I’ve researched and found this is a cause. A question I have is, if the nerve is entrapped, what is being entrapped by? Why would having a baby entrap a nerve? In cases of this being caused by childbirth is surgery the only option? I’ve become very hopeless and see no end to this. I haven’t come across any treatment options to cure this, only lessen the pain. I need some glimmer of hope.

    • Hello Lori,

      I am sorry to hear about your situation. Without an evaluation, it is difficult to confirm whether you have PN or PNE, but I can tell you that there is hope! It is never too late to begin treatment, and whether it is nerve entrapment, or a trigger point that is causing your symptoms, surgery is not the only option available to you. Pelvic physical therapy is very effective. I’d like to recommend two therapists in South Carolina. Please contact them to receive a full assessment. If you are considering traveling, most pelvic physical therapists offer a specialized out of town program that will help patients start treatment, and also coordinate treatment with a local therapist. I hope this information helps you!

      All my best,

      Stephanie

      Jessica Powley, PT and Jenna Sires, PT
      Proaxis Therapy
      Greenville, SC
      (864) 454-0952

  39. Dear Stephanie,

    I have been reading everything on PNE I can find. The website pudendalhope.info gives some good info.

    I also have given a great deal of thought to communication with my pelvic pain specialist. I didn’t give him the history of trauma to,the gluteus muscle (lacerated x 2, u repaired, scarred), other GYN trauma from early experimental efforts for endometriosis, and nerve damage from surgeries.

    Now I am headed to Mayo Clinic in Phoenix (Dr Javier Magrina) to work up the pelvic pain part first, perhaps revealing deep penetrating lesions in the rectum and colon. After that workup and interventions, I think Dr Hibner and I will still have work to do.

    I appreciate this forum to give and receive information. I read every word and as I’m not seeing patients at this time, I help with medical advocacy and education re: pelvic pain. All over the world, women and men are suffering. We need a change in our medical paradigm so that the right provider can see these patients and do the right testing and surgeries or interventions. I can be found on FB for contact.

    Thank you again.

    Judith Vance, NP
    Tucson, AZ

  40. I’ve been reading this post and its questions with great interest for over a year and have benefitted greatly from it. I have a rather embarrasing question that I hope is okay to post here. Is it possible to get pudendal nerve damage, entrapment, or irritation from rectal intercourse? I’m too embarrassed to ask my doctor. I have done this before (one partner) and have never experienced this sort of pain after. There was nothing vigorous. I have tried to look this up on various sites, but yours is the only one that offers a place where people can ask questions. I do have clitoral pudendal nerve compression that has been getting better with meditation and physical therapy, but that flares up after sex. I don’t know if that makes a difference in my question. Thank you and I do hope I have not offended anyone or asked an innappropriate question.

    • Hello Shannon,

      Anal intercourse is not a common culprit for PN, but without an evaluation it is difficult to know for certain. Is your current therapist a pelvic floor specialist that can perform an internal assessment and treatment? We like to encourage our patients to be as open as possible with their provider. We understand there may some timidness when approaching such topics, but communicating concerns is the only way to ensure your provider is aware of potential causes, issues, etc.

      Best,

      Stephanie

  41. I was attempting to shave my bikini area last night, and got a tiny cut on the underside of my clitoris. There were three very small drops of blood. Because I have pudendal nerve pain in my clitoris caused by pelvic floor tension (which I am seeing a therapist for), I am concerned that the nick from the razor could have cut the pudendal nerve. I’m pretty paranoid about that area! There is no visible mark. I can only tell this is where I got nicked because it hurts. I don’t know how close to the surface the pudendal nerve runs. Is it possible that I cut or nicked the pudendal nerve by shaving? Thank you so much for your help.
    Lauren

    • Hello Lauren,

      It is very unlikely that you nicked your pudendal nerve but if your discomfort does not resolve in a few days, perhaps you can consult with your medical provider for an evaluation.

      Regards,

      Stephanie

  42. Hi, I was recently diagnosed with PN by my gynecologist. I am not sure where to go for help. This whole thing came on suddenly. I had been experiencing lower back pain for a while but nothing like this. I have hip pain, lower back pain, problems with my bowels, urinary frequency, weird skin feelings and strange arousal like feelings, pain when sitting. This whole thing flared 2 months ago. My Doctor only has me on Amitryptaline 10 mg. I am supposed to raise it to 50 mg. I am having a nerve block in August but she stated that she does bit think pt will help. The only thing that may have caused this is shingles, which I had 2 years ago. I have had on and off pain since but nothing like this. I can barely sit for long. I live in Massachusetts and I am not sure were else I can get help. I do not want this to get worse. I can not afford to travel and my health insurance is only good in Massachusetts and RI. Plus my insurance is an HMO

    . Thank you.

    • Hello Jennifer,

      We are located in Waltham, MA but do not contract with any insurances and are a cash pay practice. Please contact our office for more information (781) 577-6648.

      Regards,

      Liz

  43. Your informative, supportive, caring blog is such an excellent resource for those of us who are researching information on PN while seeking help for this life-robbing illness. Even in metropolitan areas with numerous medical facilities and countless specialists, it seems difficult to find physicians who have any interest or expertise in the treatment of pudendal neuralgia. Are there any doctors you can recommend in the San Antonio, Texas area? Many thanks for sharing your knowledge and wisdom.

    • Hello Shirley,

      There are providers who have dedicated many years to caring for, and specializing in pelvic floor dysfunctions, however the topic is still obscure to many. Unfortunately, we do not have a therapist recommendation in San Antonio, but I can offer recommendations for other areas. If you are willing to travel, you may want to consider them. Another resource is the Yahoo message group, Happy Pelvis: http://health.groups.yahoo.com/group/happypelvis/; perhaps one of the group’s members will be able to refer you to a PT.

      Hathaway Lorien PT Plano TX (972) 579-8100
      Bobb Valerie PT Dallas TX (214) 820-1860
      Fournier Stephanie PT Irving TX (972) 579-8155
      Woerner Marie PT Fort Worth TX (817) 735-2100
      Sauder Sara PT Austin TX (512) 335-9300
      Brooks Heather PT Longview TX (903) 323-6573
      McNeely Cody PT Austin TX (512) 335-9300
      Anderson Amber PT Plano TX (225) 603-3796
      Dehne Pamela PT Austin TX (512) 231-5210
      Frits Sandra PT Irving TX (972) 412-4926
      Irizarry Stephanie PT Copell TX (972) 745-9060
      Parry Constance PT Dallas TX (214) 590-5813
      Dobinsky Angela PT Austin TX (512) 335-9300
      Francis Peggy NP San Antonio TX 2106144544
      Hakeem Fatima PT Sugar Land TX 7137996193
      Mire Charmaine OT Houston TX 2815888249
      Peters Angie PT Montgomery TX 7137996193
      Reardon Sara PT Dallas TX 2146452080
      Suire Robin PT Pearland TX 7137996193
      Bannister Tami PT Irving TX 9725798155
      Walker Carolyn PT Waco TX 2544055203
      Basler Colleen PT Austin TX (512) 219-5377
      Brinker Anna Dallas TX

      Best,

      Liz

  44. I hope I’m not double messaging, but my computer has been acting wonky, so I want to make sure my message/question went through. Please please forgive me if this is a repeat. I have current periodic issues with clitoral pain due to a compressed pudendal nerve. I have occasional flares. Currently, I have had two hemorrhoids for two months now, and neither show signs of shrinking. I have periodic pain in my anus and the surrounding area, mostly to the left but sometimes on the right as well. I read that hemorrhoids can cause or be a symtpom of anal pudendal nerve damage because they lie in the anoderm tissue, which is where the pudendal nerve lies. I have an appointment with a pelvic pain specialist next week as a follow up after seeing a pelvic floor physical therapist, and want to ask him about this as well, but would greatly appreciate any information that I could bring in to make the discussion easier. I am really nervous and embarrassed about asking him. Again, I am really sorry if this is a repeat message. I really need a new laptop! Thank you again. Ashley

    • Hello Ashley,

      Without evaluating you, it is difficult to offer specific advice, but we encourage you to look through our previous blogs and print any relevant information. We can also offer you a second opinion if you are able to travel to our office. Wishing you all the best!

      Regards,

      Liz

      • Thank you so much for being available to all of us online. My doctor believes that between my hemorrhoids and my coccyx, which gets periodically misaligned, I still have pelvic floor tension and has recommended that I see a pelvic floor physical therapist. I live in Arizona and am trying to see a therapist in San Diego. I was trying to find a list on your site of phyical therapists between Arizona and San Diego but haven’t been able to find that information yet. I will keep looking! Thank you for your help. I am very grateful.

        • Hello Ashley,

          Below is our SD therapist recommendation:

          Cindy Furey, PT
          Comprehensive Therapy
          San Diego CA
          (858) 457-8419

          Best,

          Stephanie

  45. After suffering with symptoms that are debilitating, i now know what my problem is by reading all these posts. Ive been to a Gyn and presented my symptoms and she said she has no idea what is wrong with me. I have the same symptoms as many describe here for Pudendal nerve problems. Can you please recommend someone in Central Florida and Connecticut (we are snowbirds) that can help me deal with this issue. I am just miserable. I cant sleep, sit. Only standing helps. I had joined a gym and started working out 1-1/2 hours nonstop and think this was the cause of my injury. Thank you

    • Thanks Stephanie for the name of the PT in Florida but she is 300 miles away in Miami so i will have to research and see if there is one closer, maybe Orlando.

  46. I am thinking my problem is with my pudendal nerve. I have no pain, just numbness in my vagina and clitoris following a vaginal birth 4 months ago. This was my second baby and I felt so much more pain as he was crowning than my first. I had unmedicated birth both times. I am worried now that my problem may be a stretched and damaged nerve. Is there any hope? What can be done? My OB has been unhelpful and said they do not know what is wrong with me. I really think this is it.

  47. Hi,
    I have been suffering for 7 years. Onset began immediately following a car accident that separates the pubic bone. Subsequently I have had problems in the following area:
    Shooting nerve pain from sacrum to vagina, loss of bowel control- spontaneous, bladder incontinence and emptying hesitancy- this all depends on how my pelvis is sitting or stuck. SI issues, Piriformis atrophy, sexual pain and total numbness in the vagina and inner thigh area. now I have puritis from the constant leaking of urine.
    My pelvis moves.. I feel it shift when I stand and move from sitting to standing. I get a nervy feeling and numb lumbar spine before complete bowel incontenence. I struggle to sit or climb stairs, get in and out of car and drive. Sometimes I cannot even sit on my sacrum because the nerve pain is so intense.
    Prior to this accident I was a super fit athlete. I had two very natural and normal deliveries and no issues.i have been screened for MS several times and no IBS or other bowel disease.
    I have many other injuries from the accident that are problematic by themselves but this pelvis pain and debilitating effects of the nerve and structural issues is the hardest challenge I have ever faced. I was offered a neuromodulator by my urologist but that is a general s2 to s4 damage diagnoses.
    I would like to see someone to see if we can make a plan for the future or at least know if this is as good as it gets.
    I do not make a habit of medicating as I am sensitive to strong painkillers and gabapentin etc and I have to care for my young children. I do Pelvic floor PT and it triggered the full nerve spasm and incontenence after the pudendal nerve was touched..
    I would like to know if Dr. Hibner or Dr Conway would be a good fit for me. If either one specializes in traumatic pelvis injury over the other?
    Thank you

    • Hello Kelly,

      Both physicians are specialists in this field and would be great resources for you. I would encourage you to contact them for a consultation. You may also benefit from a second opinion for pelvic PT. Are you able to travel to Waltham, MA?

      Best,

      Liz

      • Thank you Liz.
        Unfortunately I am on the far West Coast. I have contacted Dr. Hibner yesterday and will await an appointment. I do have some problems with the PT therapy but it is not a surprise to me as I struggle with touch. I tried again yesterday and woke to full pelvic floor spasms over night (which affect my diaphragm and breathing) and today my sciatic nerve and piriformis etc are all reacting.. as well as my bowels and bladder.
        I have a very caring and knowledgeable Pelvic Floor therapist but even at the most un-invasive level my body has an issue with it. We decided on a course of helping to stabalise the pelvis during the movements that cause me the most issue.. such as transferring load and getting in and out of the car etc. And also, for me to regain my confidence and try some yoga again.
        Thanks once again,
        Kelly

  48. About 9 months after a 2nd L5S1 micro discectomy in 2013, I noticed that I started to have a mild change in sensitivity in my vaginal area. I thought it to be a temporary side effect from my surgery. As time progressed, the numbness in that area increased exponentially. I researched online and the only thing I could come up with that sounded exactly like what I was experiencing was pudendal nerve entrapment. Unlike most with this condition – I skipped right over pain and went straight to numb. I saw my PCP, gynecologist, orthopedic surgeon and a neurologist. All could not figure out why I was experiencing this and all discounted the I might have pudendal nerve entrapment because it is very rare. It is also, as I’m sure a lot of you have found, a HIGHLY specialized area of study. I was then sent to a vulvo vaginal specialist. She was hoping to find I had a weak pelvic floor, but unfortunately (or fortunately depending on how you look at it) – I did not. It was at this point she suggested an MRI to look at the pelvic nerve. I saw Dr. Bredella at Mass General in Boston. Luckily, I am in close proximity to New Hampshire, so she referred me to Dr. Conway. I had an EMG and it was determined it was very likely the neve was entrapped. Due to the length of time I had been experiencing my symptoms of numbness, the increasing severity of said numbness, and my EMG and MRI results – I became part of that 5% Dr. Conway was referring to. It was determined that more conservative methods would likely not work, and I was immediately scheduled for surgery. In my case, this was bilateral pudendal nerve decompression surgery. I had the operation on 8/26 at St. Josephs in NH – performed by doctor Conway. I am currently on week 5 of surgery recovery. Immediately following surgery (once my spinal catheter was removed) I did have an increase in feeling. Not a lot – but it was enough to be noticeable. The recovery from surgery has been slow going – but that’s par for the course. Especially where nerves are concerned. I am not yet where I can perform anything but EXTREMELY light duties and I expect this will be the case for a while. I highly recommend seeing Dr. Conway if this is a possibility for any you. As I’m sure you’ve found, the number of doctors who specialize in this field is low. I saw 5 or 6 various specialists before seeing him and every time I brought up pudendal nerve entrapment I got the canned response of “that’s extremely rare. It’s highly doubtful that’s what you have”. It took me well over a year to get to the right person or get someone to listen to me. So don’t give up – if I hadn’t been as dogmatic as I was – who knows if I’d EVER get any feeling back, or how much worse I would have gotten. I also can’t say enough with respect to how well I was treated by Dr. Conway, his staff, and St. Josephs Hospital. I wish you all the best – and if anyone has any questions about the surgery or recovery – please feel free to ask me anything. And to Dr. Conway – thank you again so much for all you’ve done – I appreciate it more than you know.

    Elisa

  49. My doctor in Dayton Ohio will not give me any more trigger point injections, after 2 yrs. She does not treat pain patients anymore, takes to much time from her practice is what she told me. She believes I am to dependent on her office, takes to much time from the ones she can help. How do I find a doctor to do trigger point injections in there office? Most doctors will not do them. Anyone near me with any info.

    Linda

    • Hello Linda,

      We usually recommend manual therapy for patients before suggesting additional treatment options. Have you been evaluated by a pelvic floor therapist?

      Best,

      Stephanie

  50. I have had physical therapy many times over the 8 yrs of pain. They say they cannot help me. All seem to believe I have a nerve entrapment. I am very discouraged right now. I feel so bad and like I must be a terrible person for a doctor to not want to help me when she knows she does. I am at the lowest of lows right now. I don’t have any idea who to turn to for guidance or direction, I guess taking the pills is all the advice I get. There is no good pain doctor in Dayton Ohio that I have been able to find. Linda

    • Hello Linda,

      I am sorry to hear about your situation. If you are able to travel, we may be able to recommend a therapist who can give you a second opinion.

      All my best,

      Stephanie

  51. Liz and Stephanie, I just want to say how fortunate these folks are who are responding to your blog and asking such detailed questions that you give them hope and answers and direction to improve the care they are getting. Thank-you for all you do to educate and train and just be there for the people in distress.

  52. Liz and/or Stephanie,

    Hello,

    I’m located in Jacksonville, Fl and I’ve been having pelvic floor muscle spasms (levator ani syndrom) diagnosed by two urogynocologists since the birth of my child in July of 2013 where I had a traumatic birth with a 3rd degree episotomy. Sex is extremely painful if not impossible. I have urinary frequency also. i had anal fissures so bad that I had to see a GI doc who did a sphinterotomy. I did get some relief in having bowel movements from that. I have seen two urogynocologists, had pelvic floor rehab with biofeedback, received trigger point injections, and was about to receive Botox trigger point injections when I decided to see a manual physical therapist recommended by the urogyncologist. I’m currently seeing someone at Smartbody PT in Jacksonville and she has been doing tens unit work and some external massage. She says my levator ani muscles are in spasm and my pelvic girdle is misaligned, creating weakness in my right hip. She also says I’m having trouble locking my SI joint. She has recommended me to get dilators and possibly a crystal wand. Does this sound like the right treatment? I’m a RN, so I know how to maintain health, but this is beyond me. This had been going on for too long, and I really want to regain my normal life again. Any help would be greatly appreciated.

    Thank you.

    Meredith

    You have my permission to post this.

    • Hello Meredith,

      I’m sorry to hear about your situation. We do recommend that you get started with pelvic floor physical therapy, however we do not have a recommendation for your exact area. Below are the therapists we recommend:

      Arango Ashley Orlando FL (407) 303-8280 Ashleyann83@gmail.com Florida Hospital Pelvic Health Rehab
      Marsh Katherine Orlando FL (407) 303-8280 Katherinemarsh@flhosp.org Florida Hospital Pelvic Health Rehab
      Downey Pamela PT Miami FL (305) 666-3232
      Sher Tracy PT Altamonte Springs (close to Orlando) FL (407)257-1403 sherpelvic@gmail.com Florida Hospital

      Best,

      Elizabeth

  53. After a bad slip and fall on icy stairs early 2010 I gradually started to have hip and inner groin pain. Turned out I tore my labrum, had hip surgery. Hip feels better but the inner groin pain remained. All the Drs and specialists I have seen to date just seem to ignore it. After I did my own research , my symptoms all point to PN. I have recently started seeing a pelvic floor P/T.
    I am trying to find a specialist that can test, confirm, treat me, but having no luck.
    I am wondering if you can recommend specialists in my area , I live in British Columbia Canada. The Vancouver or Victoria area would be the biggest and closest to me.

    Thank you,

    Margo

  54. Hi pelvicpainrehab,

    I’d greatly appreciate any advice with this as I’m in a lot of life-changing pain; I apologize if any of the details in my post offends anyone.

    I’m a bi-curious male and 15months ago I used an anal sex toy for the first time; the toy in question was 5ins long and 4.5ins in diameter.

    I spent about 90mins using this toy rectally (with lubrication) whilst masturbating before going to bed. Again, I had never used anything like this before or been an anal sex receiver.

    I woke the next morning with significant, dull rectal pain, that grew and subsided throughout the day, along with burning in my anus. A few days later I felt an unusual sensation of a cold spot on my left buttock as if there was a wet spot in my underwear only there wasn’t. Gradually over the following days I developed a sharp tearing/burned pain in the sitz bone area in both my buttocks along with a dull pain in my tailbone (which I actually believe to be rectal pain in that area) and noticeable increase in urinary frequency; I have lost sensation in my rectum (the feeling of sensing flatus and stool is reduced) and I am permanently constipated and completely reliant upon laxatives for small relief; the skin on lower abdomen and buttocks is numb to the touch but can sense cold and hot; I cannot sit down for longer than 10 minutes without pain.

    All of these problems persist and only the urinary frequency has normalized.

    I have seen three gastroenterologists who are either incapable or unwilling to offer any input other than suggesting a colectomy to cure the constipation.

    I realise this is a self-made problem and I am deeply ashamed of myself an regretful but I am also terrified, lonely and losing the will to continue with so much pain and discomfort.

    Any advice would be greatly welcomed, thank-you.

    • Author Stephanie Prendergast says:

      “It sounds like you may have a pelvic floor and/or pudendal nerve problem. The changes are not likely permanent so try not to worry. You would be in th ebest hands with a physician who understands pelvic pain and a pelvic floor physical therapist. The PT may be easier to find than the doctor and can probably refer you to someone they work with. You can use the find a provider section of the blog to find someone in your area.”

  55. Hi,

    I’m currently dealing with pelvic pain, numbness and discomfort, which onset abruptly after I started becoming active on my bicycle around 2 and a half years ago.

    I’m seeing a neurologist in Santa Monica who has done MRI and nerve block injections. Based on my response to nerve blocks and the history, he thinks that I would respond well to decompression surgery.

    Dr Hibner says in the article that outcomes for surgery are not as good for patients who have had symptoms for a long time. Is 2 and a half years a long time?

    Thanks

    • Author Stephanie Prendergast says:

      Diagnosing PNE is very challenging and it cannot be diagnosed by an MRI alone. For that reason we suggest getting at least two different surgical opinions and consulting with a pelvic floor physical therapist before considering surgery. Physical therapy will be needed before and after surgery regardless, we are located in West LA and would be happy to evaluate you here.

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