The Role of Physical Therapy in Treating Pudendal Neuralgia

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nerve pain

Part II in the “Demystifying Pudendal Neuralgia” Series

After Thanksgiving we will be publishing the third blog in our pudendal neuralgia series that will focus on the pudendal nerve entrapment diagnosis and the decompression surgery that’s associated with it. For this post, we have interviewed the two top surgeons in the country that perform the aforementioned surgery, Dr. Michael Hibner and Dr. Mark Conway. Stay tuned for this groundbreaking post! In the meantime, take a look at the second blog in the series, “The Role of PT in Treating PN”.

 

In the previous post in our “Demystifying Pudendal Neuralgia” series, I talked about the difference between PN and PNE. In addition, I reviewed a list of treatment options for PN. Physical therapy was at the top of that list. Today, in this second post in the series, I will delve deeper into the role of PT in treating PN.

So what is the role of PT in treating PN?

For one thing, a pelvic floor PT is in one of the best positions to uncover the possible underlying causes of PN.

That’s because a leading cause of PN is myofascial dysfunction. Indeed, hypertonic muscles (too tight muscles), myofascial trigger points (MTrPs), joint dysfunction, and connective tissue restrictions can cause pudendal nerve irritation and the symptoms of pudendal neuralgia: sharp, shooting, or burning pain in the territory of the nerve. Pelvic floor PTs are specifically trained to identify and treat these issues.

Another reason a PT can best identify the underlying causes of PN has to do with the amount of time spent with the patient. A typical PT appointment is one-hour in length and patients generally see their PT one-to-two times per week. Spending so much time with a patient allows the PT to take a detailed history and perform a very thorough physical examination to identify the collection of impairments at the root of the patient’s pain and/or dysfunction.

Besides being in the best position to uncover the cause behind a patient’s pain/dysfunction, an important role of a PT treating PN is to help the patient sort through all past tests, interpret the responses to various treatments, and make informed choices about diagnostic tests and interventions going forward.

In our clinic, time and again we have seen patients struggle through the complexity of this diagnosis because they do not have a medical professional willing or able to “steer their ship.” Having a provider in place to spearhead the patient’s healing can go a long way toward establishing a multimodal treatment plan to treat the underlying causes of PN.

So what are some of these underlying causes?

PN pain can be caused by a combination of several factors, and that’s why there is no one-size-fits-all treatment protocol. So every patient that walks through the door of a PT’s office bringing with them a PN diagnosis is going to have a different reason or combination of reasons for their pain and symptoms.

That said, with a diagnosis of PN—and remember, “PN” is simply pain anywhere along the territory of the pudendal nerve—any of the typical suspects for pelvic pain can be involved. Those usual suspects include: hypertonic muscles that compress or irritate the nerve, trigger points, biomechanical dysfunction, connective tissue restrictions, or any combination thereof that can alter neurodynamics, which is basically the ability of the nerve to move without irritation.

For example, it is possible for a patient who has certain types of SI joint dysfunction to have less space between the sacrotuberous and sacrospinous ligaments. This space deficiency can influence the nerve’s ability to glide and move freely, and the end result may be neuralgia. Another issue that has the potential to alter neurodynamics would be a trigger point in the obturator internus muscle. This trigger point can result in a narrowing of Alcock’s Canal and irritate the nerve. (Alcock’s Canal is the structure through which the pudendal artery, veins and nerve pass.

The perineal branch of the pudendal nerve travels through the Alcock's Canal of the obturator internus muscle.

The perineal branch of the pudendal nerve travels through the Alcock’s Canal of the obturator internus muscle.

Incidentally, both of these patients likely have the same symptoms—burning at their sit bones that worsen with sitting. However, the treatment plan for each of these scenarios will be quite different. Indeed, many patients with the exact same symptoms will have very different objective findings. Often I have to explain to my patients that having pain with sitting does not mean that they have entrapment. Numerous impairments cause pain with sitting.

While any of the usual suspects or a combination of the usual suspects might be the cause of a patient’s PN, there are a handful of very specific issues that are strongly associated with pain along the course of the pudendal nerve that should be considered when a PT does his or her evaluation.

These include:

  • Sacroiliac joint dysfunction—The pudendal nerve runs out of the sacrum and through the sacroiliac joint ligaments. The space between those ligaments could be affected by a positional change of the joint, which in turn could compress the nerve. Changes in the mobility of the SI joint can also negatively impact the nerve at different locations along its course.
The pudendal nerve runs out of the sacrum and through the sacroiliac joint ligaments.

The pudendal nerve runs out of the sacrum and through the sacroiliac joint ligaments.

  • Trigger points in the obturator internus muscles—As was touched on above, the aponeurosis of the obturator internus muscle forms Alcock’s Canal, through which the perineal branch of the pudendal nerve travels. (An “aponeurosis” is a layer of flat, broad tendons whose primary function is to join muscles to other muscles or bones.) If a patient develops trigger points in the obturator internus muscle it can cause the muscle to become hypertonic. In turn, this hypertonic muscle will compress the nerve.
  • Connective tissue restrictions in the dermatomal distribution of the pudendal nerve—This is often the case when patients say they feel as though they are sitting on a golfball or cannot tolerate wearing underwear. What’s happening is the connective tissue in the area is tight and is irritating the superficial nerve branches.
  • Hypertonic pelvic floor muscles—Too tight pelvic floor muscles can cause compression along the course of the nerve and thus result in neural inflammation.
  • Neural sensitivity and ischemia – Aggravating factors such as repetitive yeast or bacterial infections can sensitize the nerve. In addition, there has been shown to be a correlation between PN and Endometriosis, Vulvodynia, and IC. To be sure, we know visceral disease states can affect peripheral nerves and it is plausible that nerve irritation can irritate visceral structures.

What the list above shows us is that the pudendal nerve itself is rarely the sole driver of the symptoms of PN, such as sitting pain. But rather, is one impairment of a myofascial syndrome comprised of many parts. This is one reason why interventions directed at the nerve alone, such as nerve blocks, often provide limited or no relief.

Take Peggy for instance, Peggy was a 51-year-old woman who came to see me after suffering for years with left-sided vulvar pain and pain with sitting. Peggy had been diagnosed with pudendal nerve entrapment (PNE).

When I evaluated Peggy, I found that she presented with a handful of myofascial trigger points in her pelvic floor and pelvic girdle muscles and also with extensive connective tissue restrictions in the bony pelvis region. In my opinion, these were the causes of the pudendal nerve irritation she was experiencing, not an entrapped nerve. Indeed, the nerve branches were not tender to palpation.

Peggy had a history of endometriosis, which likely led to her pelvic floor issues. It is therefore plausible to think Peggy developed trigger points in her hypertonic pelvic floor. Plus, endometriosis, pelvic floor dysfunction, and trigger points are all known to contribute to connective tissue restriction, which can, in turn, cause further pain and dysfunction.

Another patient who came to me who had been given a diagnosis of PNE was Tony. Tony was a 29-year-old male who came to me with a litany of symptoms including lower abdominal pain, left pain when sitting at the sit bones, perineum, penile and groin pain, urinary frequency and pain with bowel movements. Tony was an active professional who skied, snowboarded, worked out in a gym, played basketball, skateboarded and surfed.

His symptoms began after he did a few handstands in his backyard at a barbeque. Prior to booking his appointment to visit me, he had spoken to an out-of-state physician who advised him to book an appointment for a pudendal nerve decompression surgery, after only speaking with him briefly on the phone.

When I evaluated Tony, I found pelvic floor muscle trigger points as well as trigger points within his abdominal wall and overall muscle tightness and connective tissue restriction. After regular PT and one abdominal trigger point injection, Tony is now pain-free. (To read Tony’s case study in its entirety, please click here.)

Appointment Day

A PT needs to take a detailed history to understand how patients developed their symptoms, and then undertake an initial evaluation. In the cases of severe, chronic presentations the evaluation may take up to four hours (or four one hour appointments).

During the initial evaluation, the physical therapist needs to evaluate all of the following:

  1. Connective tissue of the trunk, bony pelvis, and lower extremities
  2. Pelvic girdle muscles
  3. Pelvic floor muscles
  4. Lumbo-pelvic and hip joints
  5. Peripheral nerves (sciatic, pudendal, posterior femoral cutanoues, etc.) need to be palpated for Tinel’s sign
  6. Sensitivity of the central nervous system

Following the evaluation, the therapist should be able to develop a reasonable assessment for the patient as to which impairments are causing which symptoms and how their pain kicked off in the first place.

For example, if we look back at Tony’s case, I found out he did about 200 sit-ups daily. Additionally, I also learned he was afraid of developing hemorrhoids and therefore constantly squeezed his pelvic floor muscles, believing this would prevent the development of hemorrhoids. This behavior certainly did not prevent a hemorrhoid, but it did set him up for pelvic floor muscle tightness that irritated his nerve.

Plus, it’s known that excessive strain to muscles (too many sit-ups) can cause trigger points in the rectus abdominus muscles. Trigger points become symptomatic when activated, which happened when Tony stretched his stomach by doing that handstand. These trigger points, in turn, can cause urinary frequency and burning at the tip of the penis.

So with a little detective work on the part of the PT after taking a complete history from the patient, it is possible to understand the origins of a patient’s pain/dysfunction.

Once the PT has identified the reason or reasons for the patient’s neuralgia, treatment involves restoring normal physiology to whatever structures are involved using a variety of methods, including manual therapy.

In addition, PTs are responsible for explaining their findings to their patients as well as describing what their treatment strategy will be. Communication with the patient is imperative during the course of treatment. All too often, my patients have told me that they weren’t sure what procedure they had done or why they were undergoing certain treatments. It is absolutely crucial that both the provider and the patient are aware of what is being done and why. Treatment for these difficult issues is not a passive process and everyone needs to work together (more on this point in upcoming blog posts).

Reasonable Expectations 

In addition to all parties being aware of what is being treating and why, it’s important for PTs and patients to have clear conversations about reasonable expectations, not just for PT, but also for the overall treatment plan. All too often, patients are led to believe that certain treatment procedures are going to be a “magic bullet” cure. This is due to misinformation and poor communication with their providers.

For instance, I see a very common pattern when talking to my patients about their previous treatments. A patient will often tell me “I had trigger point injections and they did not work because I still have pain.”

The fact that there is still pain does not necessarily mean the treatment was a failure and should be entirely discounted for future use.

For instance, I once had a female patient with vulvar burning who had injections into her obturator internus muscles prior to coming to see me for PT. Following the injection, she had temporary relief of her pain. However, she was upset when her pain returned the following day, so she put trigger point injections on the “failed treatment” list, deciding never to try them again in the future.

So why did her pain return? Either the injections did not eradicate the trigger point or the trigger point was not as heavily involved in her pain as had been thought.

Fast forward to my evaluation with the patient. I found another trigger point when examining her pelvic floor, this one in her bulbospongiosis muscle. I worked to release the trigger point, but while her burning would decrease with our sessions, it never totally went away. However, neither did the trigger point. For some reason, manual therapy was not enough to eradicate this stubborn trigger point.

At that point, I suggested that she again try trigger point injections—this time targeting the trigger point in her bulbospongiosis muscle. She was very skeptical, however, she did have the trigger point injection. The end result was that the injection (with a bit more PT) eliminated the trigger point, and her burning resolved.

My point here is that when patients don’t understand what outcomes they should reasonably expect from a particular treatment method, there is a risk that they will chalk up that treatment procedure as a failure if it does not completely cure their symptoms. So it’s important for patients and providers to have open discussions about reasonable expectations throughout treatment. That way all treatment avenues are left open, and patients don’t get overly discouraged and give up.

Treatment Time

There is no definitive timeline for how long a patient should receive physical therapy for PN. For some patients it takes a few months, for others it could take a few years to achieve optimal results.

Realistic goals should be set on the first day of therapy and each appointment should be directed at achieving those goals. Of course, every patient’s ultimate goal is to get better and be pain-free; however, during treatment it’s important to set and to track short-term, attainable goals. At PHRC, we set short-term (six to eight weeks) and long-term goals (twelve to fourteen weeks). Short-term goals are impairment based. Examples are:

1. Eradicate obturator internus MTrP to improve sitting tolerance.

2. Decrease puborectalis hypertonus to improve ability to defecate.

3. Decrease pelvic floor hypertonus to decrease urinary frequency.

4. Normalize connective tissue in the bony pelvis to improve clothing tolerance.

The short-term goals will help achieve the longer term, functional goals. Examples of realistic long-term goals might include:

1. The patient will be able to tolerate sitting for 45 minutes to be able to drive to work.

2. The patient will void no more than six to eight times in a 24-hour period and will do so without urethral burning.

3. The patient will be able to stand for 30 minutes to cook dinner without an increase in perineal burning.

Treatment Approach

When it comes to treating patients who come to us with a diagnosis of PN from a physician or other PT, at PHRC we treat these patients the same way we treat all patients with pelvic pain. Our treatment approach is focused on restoring normal physiology to whatever structures are involved in the patient’s pain. So first step is to figure out who the culprits are and then the next step is to go after them with guns blazing! Our treatment approach includes:

  • Myofascial trigger point release all along the involved pelvic girdle and pelvic floor muscles.
  • Manual techniques that normalize the length, tone, and help patients regain control of the pelvic floor muscles.
  • Connective tissue manipulation to normalize dysfunctional tissue.
  • Restoration of normal neural mechanics through direct glides and mobilizations and indirectly by treating other impairments.
  • Mobilization and stabilization of the sacroiliac and hip joints.
  • Individualized Home Exercise Program
  • Temporary Lifestyle Modifications

And as with all of our patients, we embrace a multidisciplinary approach when treating PN. Appropriate adjunct treatment options might include: pharmaceuticals, including vaginal and rectal suppositories; pain management, interventional medicine strategies, such as trigger point injections and botox for muscles that are compressing the nerve; peripheral nerve blocks in certain situations (but not as a first-line or mandatory component of treatment), pain education, and cognitive reprogramming. (Cognitive reprogramming is a good fit when a patient’s symptoms are associated with central sensitization. Here we’re talking about strategies aimed at rewiring the nervous system. Stay tuned for an entire post on this topic!)

Going back to Peggy’s case, after about a year and a half of regular, weekly PT, coupled with trigger point injections and medication including Neurontin and Valium suppositories, Peggy is now 95% pain-free. (I report that she is 95% pain-free because there are occasions, such as when she has to sit for long periods on a plane ride, that she will have the occasional flare up. She says that her flares are about a 3 or 4 on her personal pain scale. She manages her flares with a Valium suppository, by internally stretching her pelvic floor with a dilator and by icing.)

If you’d like to read more about our general pelvic pain treat methods, the same ones we apply to PN patients, please click here.

In this post, I hope I’ve succeeded in shedding some light on what has for so long been perceived as an intimidating diagnosis. In the coming months, please look out for the next installment in my “Demystifying Pudendal Neuralgia” Series when I’ll tackle the PNE decompression surgery, among other topics.

Click to read the previous post in the series, “How do I know if I have PN or PNE?” 

In the meantime, if you have any comments about any of the points I’ve covered in this post; please leave them in the comment box below. I hope to hear from you!

All my best,
Stephanie

 


136 thoughts on “The Role of Physical Therapy in Treating Pudendal Neuralgia

  1. “Dilator” sounds more frightening than my Theracane. Does that word refer to an apparatus or a drug in this context?

      • Hi,
        I have had PN x 5 years since pelvic surgery; vaginal hysterectomy, rectocele repair for prolapse, including TVT sling insertion, since removed by Dr. Miklos. This original pelvic surgery/surgeon has destroyed me and my life as I knew it. I have had pudendal nerve decompression by Dr. Hibner a year ago and so many more treatments it would take a book to write it all. I am depressed and cannot rid myself of this debilitating pain. Many people have suggested exercising more which I am open to, but am very afraid to irritate the condition more. I have had 9 mos. intense pelvic therapy by a PT in Oakbrook, Il. prior to my PN decompression (did not work)and PT afterwards.
        I would like to exercise on my own since I am 56 years old and feel I have the body of a 90 yr old. I would love to have suggestions on what exercise I should do to that won’t aggravate the pain. I know I need to do something other than taking pain medication and lying in my recliner when I’m not working as a nurse.
        Thanks.
        Cyndi

        • Dear Cyndi,

          We are posting a blog on this very topic next Friday; I have taken the liberty of signing you up to get our weekly blog emails so that you will get it in your inbox when it is posted.

          All my best,
          Stephanie

  2. wow. this has to be the best information I’ve seen since being diagnosed with pne 7 years ago. I should never had the decompression surgery. I have to find a good PT to help me. thank you so much

  3. This is the most comprehensive account I have ever seen on PN. The only thing i would add (not being a pelvic floor physio but a musculoskeletal one) is that you include a lumbar spine, thoracic cage and hip assessment as there as sometimes the pelvic pain is secondary to dysfunction elsewhere.

    Fantastic post – thank you!

  4. You guys rock! This info is spectacular for patients, but as a pelvic floor physio, it’s like a free course (a very well written free course). So thank you for your time and for sharing the great info in your brain 🙂

    Lori

  5. Is “cycling syndrome” a form of PN? I started getting pain in my pelvic area two months ago after an 80 mile bike ride to Pt. Reyes from SF. I have been told by my doctors at Kaiser that I have “pudendal neuropathy” and a compressed/bruised pudendal nerve. My pain is pretty mild, though I’ve had dysfunction as well

    I have an appointment with your office in SF for April 1st. I hope you guys can help me!

    Robin.

    • Dear Robin,

      It is absolutely not necessarily a form of PN. Cyclist’s syndrome simply refers to pelvic pain that seems to have started from cycling. The pain could just be coming from restricted muscle and tissue due to compression from the bike seat. However, it can develop into PN, but it doesn’t always. PN is characterized by burning, shooting, stabbing pain in the territory of the pudendal nerve. The territory of the pudendal nerve is the genitals, the perineum, the anus and the peri-anal area. If you don’t have these symptoms you don’t have pudendal neuralgia and definitely not pudendal neuropathy. Pudendal neuropathy is when there is actually damage to the nerve, which I doubt you have, and neuralgia means there is pain coming from the nerve. When you come in for your appointment on the 1st we’ll discuss this in greater detail, but for the time being, I wouldn’t be very worried that you have pudenal neuropathy or neuralgia. Regardless, we can help both pain coming from dysfunctional tissue and muscle as well as the pudendal nerve so you’re in good hands either way! We look forward to meeting you.

      All my best,
      Liz

  6. Thank you for the excellent articles. They are very helpful to me as I am just trying to navigate my way to a treatment plan for severe vulvar and anal pain. I have started seeing an excellent PT and a caring acupuncturist but after 3 months without pain relief I am struggling to survive and my family doctor has prescribed oral Gabapentin. Can the PT still be done if I am on pain meds? Where could I find out more information about the suppositories you mention as I would like to see if they would be a better option than the oral medication for me. Many thanks, Alex

    • Dear Alex,

      I’m so glad you have found a good PT and you are on the road to recovery. Yes, you can certainly do PT while taking meds. PT SHOULD be one component in a multidisciplinary approach to treating your symptoms. Medication is another very important component for most patients. As far as the suppositories, they are prescription only. You will have to find a doctor that can prescribe them. If your doctor does not prescribe them, you could call compounding pharmacies in your area to see if they are able to compound them, and then ask your doctor to talk with the pharmacists about what they are, how they work and how they need to be prescribed. Some doctors are willing to do this.

      I’d like to recommend that you check out Happy Pelvis. It is a message group that provides support to those dealing with pelvic pain recovery. They are a very positive and proactive bunch. The web address is: http://health.groups.yahoo.com/group/happypelvis.

      All my best,
      Stephanie

      • Thank you for the response. You haven’t mentioned so far as I can see whether or not the pain being daytime only or 24/7 as significant in either diagnosis (PN/PNE) or outcome expectations. Alex

        • Hi Alex,

          The symptoms can be intermittent or constant and vary throughout the day, typically getting worse as the day goes on, in either diagnosis. This characterization of the pain is not significant in outcome expectations for either diagnosis.

          All my best,
          Stephanie

  7. Hi Stephanie, great article, please would you offer some advice. Ill try to keep it short.

    I live in UK and have a kind of “stuck” feeling in my inner rectom/perinium area. I have a burning type of feeling that jumps around between my penis, testicles, pubic bone. It hurts a lot and gets much worse after sitting. My penis appears to be almost hypertonic, tight and constricted in appearance. I also have a partial loss of sensitivity in my penis. I can feel touch and temperature but fine touch sensitivity has become reduced. It even hurts my back in a very particular place on lumber spine. This is definitely connected to my pelvic injury as it was fine beforehand. MRI of lumber/sacral area clear apparently appart from very slight bulge at l5/s1 but was told this was not cause of pain.

    This started after one of the following :stretching my penis as a warm up before masturbation, sitting on the corner edge of a computer chair. I get the feeling its the first.

    1. What does all of this sound like to you? What could I have done by holding the penis in an outstretched position?

    2. Do you think I could find anyone of your ability who is in the UK?

    3. Do you think I could give a pelvic physiotherapist your article, and would this be enough for them to help me?

    Thank you and sorry for the long post.

    Kindest Paul.

    • Dear Paul,

      Unfortunately, it is impossible for me to know what is going on with your pelvic floor etc. without evaluating you. I think it is wise to see a pelvic floor physical therapist. We recommend Bill Taylor in Edinburgh or Maria Elliot in England. They have both been in our PN course. Of course, you are welcome to give the blogposts to anyone you need to.

      All my best,
      Stephanie

  8. Can you recommend a PT person in Louisiana? I live in Baton Rouge, LA, but I’m willing to drive as far as necessary to see someone knowledgeable in this area of therapy. Any assistance is greatly appreciated!

  9. Hi Stephanie,
    I appreciate the very helpful information about PN. I have had pain for four years. Many doctor’s later I diagnosed myself with PN. It was confirmed by a pain specialist and a pelvic Physical Therapist which was ordered by gynecologist.
    My pain did not resolve after a ventral rectopexy, sacral colpoperineopexy,hysterectomy,trans obturator monarc urethral sling. I had those necessary surgeries for a rectal prolapse and anterior compartment prolapse in May of 2013.

    I had two evaluation visits with my physical therapist and was given home stretching exercises, pudendal nerve shearing exercises, glute work, piriform stretch. I am wondering if I started therapy too soon after my surgery since I started to experience some of my pre-op symptoms of uncontrolled expelling of gas and some urge and stress incontinence and feelings as well as urinary frequency. Plus I felt pulling at the areas of the tot sites. Obviously I don’t want to undo the mesh repair.
    Thanks,
    Mary

    • Dear Mary,

      The symptoms you describe can be caused by numerous impairments. It sounds, however, like you may have motor control issues as well as muscle hypertonus. Your PT should be able to to tell you which impairments are causing your post-operative symptoms and help you understand the treatment plan to correct them.

      All my best,
      Stephanie

  10. Hi,

    Can you recommend a PN PT in central MA? I live near Worcester, MA. In your opinion can PN get worse? If yes, what activities can do so? I rode a light rail and then the subway (about 5 hours) to a doc appointment in Boston today. We thought that since I could stand it might be better than a car ride, but the stopping and starting was quite vigorous (did not think about it until it was too late), so I’m nervous about a flare-up or maybe hurting myself more. How soon after would I have a flare-up?

    Thanks,
    Dee

    • Dear Dee,

      Flares do occur with pelvic pain, whether the pudendal nerve is involved or not. Typically is an activity is going to flare you it would be immediate or a few hours later. Hot baths, ice, taking it easy, all help to overcome a flare.

      I’m not familiar with the geography of Mass., so I’m just going to give you a list of all the PTs who have taken our class in the state. See below. All my best, Stephanie

      Clarke Anne PT Braintree MA (781)348-2500 abousc@aol.com Braintree Rehabilitation Hospital
      Fonti Hannah PT Danvers MA (978) 304-8701 Lahey Health
      Levesque Ann PT Beverly MA (978) 927-7668 annlevesquept@gmail.com Did not attend a course– good recommend for Boston
      Lewis Elizabeth Burlington MA (978) 761-3149 and (781) 744-8617 Ebethlewis@comcast.net Lewis Physical Therapy and Lahey Clinic
      King Linda PT Brauntree MA (781) 519-4756 lindawolfking@yahoo.com Self
      Bentley Carolyn PT Amherst MA (413) 253-0413 carolynsbentley@yahoo.com Cooley Dickinson Hospital, Amherst Rehabilitation Services
      Barnicle Katie PT Westwood MA 7814319144 katie_barnicle@yahoo.com Spaulding Rehabilitation
      Cole Elizabeth PT Waltham MA 7814873821 ecole1@partners.org MGH PT Services
      Gillis Janet PT Dartmouth MA 5089980620 Center for Women’s Health
      Machugh Lalla PT Quincy MA (617) 479-8500 x 126 South Shore YMCA
      Perlis Raquel PT Wellesley Hills MA (781) 237-9006 racapt@aol.com Raquel Perlis, PT
      Herman Holly PT Cambridge MA (617) 576-3204 hhherman@aol.com Healthy Women
      Wade Marie PT Framingham MA (207) 779-2256 Franklin Memorial Hospital
      Cunningham Patrick Acc Arlington MA (617) 489-2381 acutrail@gmail.com Self
      Lewis Elizabeth PT Gloucester MA (978) 761-3149 Elizabeth.L.Lewis@lahey.org Lewis Physical Therapy and Lahey Clinic
      Bentley Carolyn PT Northampton MA (413) 582-2113 bentleypelvicpt@gmail.com Cooley Dickinson Hospital
      Berger Stacey PT Westboro MA (508) 366-7899 skberger@sc-pt.com South County Physical Therapy
      Herlihy Sarah PT Wellesley MA (781) 237-9906 samherlihy@verizon.net Racquel Perliss

  11. Hi Steph:

    I write from Chile. In my country I didnt find and I wont find a proffesional for this problematic condition. Can you recomend to me some exercises to practicate? I would like to improve mi lifestyle.
    Thanks a lot!
    Carlos

    • I’m sorry Carlos, but without knowing what is wrong with you I can not know if there are any self-treatments you can do to help yourself.

      Liz

  12. Thanks for a great post, as always.

    I’d also like to share the importance of the latest brain/pain research and how it’s shaping the way we treat patients dealing with PN. Integrating this into my practice has been amazing. When patients don’t respond to direct manual/connective tissue techniques right away, I find sometimes there are ways to desensitize the system first before patients can tolerate the direct treatments. I use many indirect manual techniques along with neural education (such as the book “Why Do I Hurt” by Louw or Explain Pain) I also use biofeedback, but to DECREASE muscle activity firing/downtraining (as you also advocate – NO kegels!).

    There’s certainly a lot of confusion about PN. Thanks for providing good info.
    Regarding dilators – here’s a blog post of mine on how to use dilators when dealing with pain (to down regulate): http://pelvicguru.com/2013/08/30/vaginal-dilator-guide-for-patients-part-1/

  13. I am confused how burning at sitz bones correlates with diagnosis of pudendal neuralgia. You explained that the pain would be in the territory of the nerve, basically what the nerve innervates which would be the saddle area. How does pain at sitz bones correlate. I have pain atsit bones, clitoris throbbing intermittently, left sided vestibule burn intermittently, hypertonic left obturator that has had trigger points for eight months. Could this also be from posterior femoral cutaneous. Started after several BV and yeast infections and driving long distance. I also am a very anxious person with IBS and TMJ.

    • Dear Erin,

      Patient s with pudendal neuralgia commonly have pain at the ischial tuberosities as well. The posterior femoral cutabneous nerve can cause pain at the ‘sits bones’, as well as other impairments that are commonly associated with PN such as Obturator Internus myofascial trigger points and connective tissue restrictions in that region, to just name two. The PN may be responsible for the clitoral and vestibular pain.

      All my best,
      Stephanie

  14. Thank You for the great information on treatments. It gives me hope. I was an avid cyclist but could no longer sit on my bike because of the pain in my ischium tuberosity. I was diagnosed in the spring with PN by a Dr. in NH. I started pelvic floor PT which wasn’t working for me, so went to a women’s health clinic outside Boston and was diagnosed with vulvodynia. Refered to another pelvic floor PT and a physiatrist who does trigger point injections. And while I am making small improvements the obturator is still a painful issue for me. My physiatrist says she can’t do trigger point injections for that muscle. I noticed you mentioned that indeed it can be done. I would think it would be very helpful for the pain in my ischium as well. I am wondering what your thoughts are on this and as much as I like my Doctor I would try someone else if I thought it would be helpful. I saw your list of PT’s above but wondered if you knew of anyone doing trigger point in the Boston area who would do what I need.
    Thank You again for continuing to share your knowledge with us.
    Pam Harrison

    • Dear Pam,

      I think it is a good idea to try to find a doctor who will Botox the obturator, but I’m sorry we do not know of a physician in your area who does Botox. I would recommend that you contact the PTs in the list above. Often they can recommend docs. All my best, Liz

    • Dear Pam,

      Trigger Points in the Obturator Internus can refer to the ischium, however, numerous other structures can as well. It is important to get an accurate assessment as the pain that you describe can also from a combination of impairments. The OI can be injected. I am not sure who in your area can do this but your PT should be able to help.

      All my best,
      Stephanie

  15. Hi Stephanie, I have been following your blog as I have been diagnosed with pudendal neuralgia and my symptoms are pain and pressure in the sacrum while sitting, burning in the urethra while sitting and urinary hesitancy and urgency, pelvic floor muscle spasms/contractions, anal contractions while defecating, constant arousal feelings in the vagina and clitoral hypersensitivity, pain after orgasm and pain when the area of the right pudendal nerve path is palpated and inability to empty bladder fully. I am on gabapentin 900 mg a day with some help and clonazepam at night for sleep. I also am seeing a pelvic floor physiotherapist and she is doing internal work in helping me relax my pelvic floor as she says I have tight pelvic floor muscles and when she presses along the path of the pudendal nerve inside my vagina on the right it causes pain and pelvic floor muscle contraction. I am also getting a MRI soon to rule out any spine and pelvic anomalies. What do you think I could have is this PN? Could it be something else? What else would you recommend my physiotherapist to do? Thanks Kellie

  16. Thanks for this excellent information. Do you know of any pelvic floor PT’s in Southwest Missouri?

    I experienced my first episode of PN back in 2007, after a 14 hour airline flight. Shooting electrical shocks, pins and needles, and a red, irritated scrotum and perineum were my symptoms. My internist was clueless as to the cause, and referred me to a dermatologist, who prescribed topical steroids, suggesting I had irritated my genital skin by too much scratching. After about four months of genital pain, i slowly returned to normal.

    In late September of this year, after a 9 hour flight, I began to experience identical symptoms. Too coincidental. After hours of internet research, I ran across information about PN, and it clicked. Less pain in the morning and intensifying later in the day. Tingling while sitting. The feeling of a foreign object in my rectum. Further symptoms prior to and after a BM. I firmly believe the problem was from sitting on a hard airline seat for a prolonged period of time. So i printed off some information, and went to see my doctor. After reading my printed articles, he disappeared to research the subject on his own,then returned and he concurred.

    While he did not suggest PT, he did prescribe Lyrica and an SSRI to alleviate the pain symptoms (although initially Cymbalta, which I could not tolerate). I discontinued the Lyrica after three weeks, as it caused me to feel mentally fogged. While I’m still on an SSRI, I find that NSAID’s provide significant relief. Additionally, the Salonpas NSAID dermal patches work wonders for me. I cut them into smaller patches and apply them directly on the perineum with excellent relief. While I’ve had a lot of improvement over the six or seven weeks, the nerves in my genital area are still quite sensitive.

    I suspect a need to see a PT. I had been lifting weights and doing quite a bit of core strengthening exercises, which I’ve temporarily discontined. My massage therapist mentions an issue with my ITB (?) being extemely tight.

    Thanks again for your excellent information.

    • Dear Chuck,

      The fact that you were able to heal from your symptoms once before is a great sign. I do think it would benefit you to see a good PT in your area. Below is info for the only PT that we refer to in MO. All my best, Liz

      Gibson Sandy PT Kansas City MO (816) 932-3344 slgibson@saint-lukes.org Saint Luke’s Hospital

  17. Hello, I have been gradually recovering from vulvadynia with some elements of pn for 3 years primarily with private physio and self treatment. Things are much better. I have recently been told by my NHs physio that tens (on a non contracting frequency) could help desensitise the area (as there has been some autonomic dysfunction). Is this possible?

  18. Thank you so much for all the information, I have been in pain since my hysterectomy in 2001 and am very discouraged. Do you know of any physical therapists working in this area in Toronto , Canada?

  19. Hello, I am an RN, who works in a pain mangement/ orthopaedic office, trying to assist a few patients we have recently been referred. 2 of the patients are males, 1 female, all having various possible reasons for PNE. (Both males most likely have entrapment, due to scar tissue formation, 1 from a radical prostatectomy and approx 40 radiation treatments, the other is s/p 2 varicocele surgeries). The patients have responded well to pudendal nerve blocks, both receiving benefit from the anesthetic portion to isolate the pain generator. However, at this point, 1 has not benefitted from the steroid portion, the other has. Not enough time has lapsed to know the full length of time the steroid will provide. After doing much research, the surgical approach that appears most desirable, both in outcome and the rehab time, is through a scope. However, it appears that there are no surgeons in the US performing the PN release using a laproscopic approach. Hopefully this will change in the near future. My question is, do you know of any physical therapist located in or around Little Rock, AR? We are continuing our efforts to direct the patients with as much non-invasive treatment as possible, prior to embarking on surgery. I would be interested in knowing if anyone you know has traveled to Turkey, where the laproscopic decompression, along with a transposition with omental flap, (to prevent refibrosis) has been used, by Dr. Tibet Erdogru? He appears very knowledgable, and e-mailed me back offering assistance. For patients ultimately needing surgery, this procedure seems very promising. Thank you in advance, Jodi, RN BSN

  20. Hi again,

    Thanks for the list of MA PTs. Many of them are over an hour from my house so getting to appointments would be difficult. I was wondering if have you heard of Laura Rosbach? She is a new PT at Reliant Medical Group in Worcester, MA. She used to be in Blacksburg, VA. She said she has experience with female pelvic pain and PN/PNE. My current PT and I feel like we’ve hit a wall, so I thought I’d try someone else. Thanks for any input.

    Dee

  21. Do you have a recommendation for a PT or professional who can help with rectal spasms in South Jersey/Philadelphia area? Thank you.

    • Dear Barbara,

      Below is info for the PTs we refer to in NJ and Philly:

      Herzig Niva MS,PT Englewood NJ 201-568-5060 info@coredynamicspt.com Core Dynamics PT
      Besante Jamie PT Beachwood NJ (609) 978-3110 jamiebesante@gmail.com Southern Ocean Medical Center
      Dela Rosa Michelle DPT Columbus NJ (609) 379-0900
      Ryan Angela MD Englewood NJ 2015672277 angelaryanmd@hotmail.com Physical Medicine and Rehabilitation Center
      Ely-Maskal Nancy PTA Englewood NJ 2015672277 masknan@aol.com Physical Medicine and Rehabilitation Center
      Sheth Hina PT Philadelphia PA 267-282-1301 hinashethpt@gmail.com Rebalance Physical Therapy
      Rejba Amy MSN, CRNP Philadelphia PA 2158638100 Pelvic and Sexual Health Institute

      Best,
      Liz

      • Hi Liz,

        Are these all of your recommendations in the Philadelphia area? I am a male looking for a diagnosis and treatment of symptoms that seem to be associated with my pudendal nerve.

        Thank you so much.

  22. Thank you for this great information.
    How should I start looking for a doctor in my state or city in regards to this pain issue?

    I talked with my OB/GYN who sent me to a proctologist who did not see any major issues like anal fissures etc… and I have a new chiropractor who actually figured out the nerve within the body. This is how I began my research I have been dealing with this issue for years. I had a hysterectomy hoping this would resolve the problem,but this pain is still there.

    • Carol,

      Where do you live? I am the president of the International Pelvic Pain Society and therefore am familiar with many specialists across the country; perhaps I can give you the name of someone? A physician and a PT. In addition, there is a wonderful online support group for women and men with pelvic pain called Happy Pelvis; Here is URL: http://groups.yahoo.com/neo/groups/happypelvis/info.

      Best,
      Stephanie

      • Stephanie,

        I came across your reply to Carol, and I wonder if you can provide the name(s) of a physician and/or PT in or near Frankfort, KY, or Lexington, KY.

        • Hello Judy,

          We do not have therapist recommendations for KY at this time. Are you able to travel elsewhere?

          Regards,

          Stephanie

  23. Have to say this blog is one of the most well written sites available it really does make everything easier to understand. I have been suffering with Chronic and debilitating Pelvic pain. However, I live in Ireland and have tried so many different types of treatment but have yet to meet any kind of therapist who is familiar with pelvic issues especially as I have not had children and the only types of pelvic floor therapy seem to involve around incontinence. So desperate for help with the agonizing pain would be on a plane to your clinic tomorrow if it was possible.

    Keep up the good work fantastic site!

  24. Hi.

    Had a question about a response you wrote earlier in this thread. You wrote “Medication is another very important component for most patients.” Are you saying that most people who get positive results from PT are also on some form of pain medication? This scares me because I don’t want to take any of that stuff.

    • Also, couldn’t that basically mean that it was the medication and not the PT that was helping? Another scary prospect as I definitely want PT to be the answer.

      • Dear Brendan,

        The fact is that the patients that do the best are the ones that pursue a multidisciplinary approach to their treatment; meaning they see all of the relevant providers to their particular case. When it comes to pelvic pain, often many systems are involved and this is the approach that works best. Medication, not necessarily “pain medication” or opiates are often used to successfully treat pelvic pain. Some meds like Neurontin or amitriptyline work on the the nervous system, which is a major player when it comes to pelvic pain.

        So ultimately, for many, PT, while a major piece of the puzzle, is not in and of itself the answer.

        At our clinics because we understand that we are the ones that are going to be spending the most time with our patients, we try our best to help them coordinate their multidisciplinary treatment.

        All my best,
        Liz

  25. Thank you for your site!!
    I have had SI joint issues since the birth of my second child in 2010, and after a course of my first PT started my PN symptoms. Now going to pelvic PT and she had me stop my core exercises (and a lot of the exercises I was doing, including my elliptical machine) to try to help my SIJD because she said those irritate the Pudendal Nerve. Now my back pain is worse than ever, but my PN issues aren’t as severe.
    My question is: are there ways to help my SIJD without damaging my pudendal nerve?
    And please can you recommend someone in Minnesota who knows about PN?
    Thank you so much I’m stressing a lot over this 🙁

    • Dear Elizabeth,

      Yes pelvic physical therapists can treat your SIJD without aggravating your pudenal nerves. We dont usually find that epidurals cause PN, but it would be a good idea to ask your therapist. We recommend Theresa Plasencia, PT in Minnesota. Her information is located below.

      Theresa Plasencia, PT
      Minnesota,MN
      (651) 493-0626

      Best,

      Melinda

  26. Tomorrow I start physical therapy at one of the places you recommended, and I cannot thank you enough for the information you have provided me with! It seems as though most people have been dealing with these symptoms for months or even years, whereas I have only been experiencing them for about 6 weeks, intermittently.
    Considering your hands-on experience and expertise, I was wondering if you find that patients who respond positively to PT (or make a complete recovery) are more vulnerable to experiencing PN symptoms later on again in life? Could something like sex or child birth re-trigger these symptoms? Thanks again!

  27. I had pudendal irritation after rough sex four months ago. I don’t have any burning just pins and needles in my perineum and labia when pressure is applied. The reason sitting makes it worse is bc it applies pressure but even if I’m standing and push with my fingers it triggers the pins and needle feeling. I went to pt for a month. I had little to no sensitivity when she internally pushed on the pudendal nerve, but she didn’t feel my muscles were tight either. Any ideas here? I want to continue with pt but I’m not sure she sees any issues. My tingling is bilateral and doesn’t go past the perineum. So confused if this is a nerve irritation or an entrapment and where to go from here :/

    • Dear Danielle,

      I would recommend seeing another PT; I find it hard to believe that based on your symptoms that you don’t have any pelvic floor, connective tissue findings. The fact is that not all PTs are created equal. Where are you located; perhaps we can refer you to someone in your area.

      Also, I wouldn’t focus on entrapment at all. It is VERY rare and you would not develop it from sex.

      Let us know where you’re located and we’ll send along a PT referral if we can.

      All my best,
      Stephanie

      • Stephanie,

        Thank you. I feel desperate. My pt said bc it’s pins and needles it has to be a nerve issue. Is this true? She said burning would be a better sign. I’m in phoenix Arizona. I also saw dr Hibner and he also said he wasn’t sure and offered to do a nerve block, but I don’t know if I’m ready to go that route. I have elavil I am starting today, I just feel like that will mask the symptoms not cure anything. I hate the idea of taking medicine forever. Any advice and a good pt would be great!

    • Hello Tammy,

      Yes Pamela Downey, PT is located in Miami Florida. Her contact information is below.

      Pamela Downey PT, DPT, WCS, BCB-PMB, PRPC
      (305) 666-3232

      Regards,

      Melinda

  28. Hi
    Can you recommend anyone in the Ann Arbor, MI 48104 area for PT? I have been to PT twice for PN, and have had 7 injections, with one of them helping for 3 weeks.
    I am considering PRFA of the pudendal nerve or cryotherapy, but thought maybe I should give PT another try with someone else?

    • Hi Dede,

      Perhaps seeing one of the therapists listed below for a second opinion would be a good idea before considering a PRFA of the pudendal nerve, or cryotherapy. Also, we find that physical therapy is successful when a consistent treatment plan is followed.

      Kristen Miles, PT
      Royal Oak, MI
      (248) 655-3011
      Women’s Urology Center

      Catherine Veeser, PT
      Ferndale, MI
      (248) 655-3000
      William Beaumont Hospital

      Best,

      Malinda

  29. Stephanie,

    Your articles about PN and PNE are very helpful. I started getting symptoms of PN about 4 years ago, and now I have all of the primary symptoms. After reading your articles, I realize now that most of the stuff I’ve read about this on the internet are very outdated. You’ve answered so many of my questions, and alleviated many of my fears.

    It seems clear what I need to do about this, but I don’t think there are any doctors or PT’s who are trained to deal with PN where I live. However, I could be wrong. Are you aware of any doctors and PT’s in the Rockford, IL area that are on top of things the way you are? Or perhaps the Chicago area? Also, we are seriously considering moving to Charleston, SC. If you can provide recommendations for these areas, it would be appreciated. If I have to work with a PT for, perhaps, the rest of my life, we are willing to relocate.

    Thank you

    • Hello Steve,

      Below is the list of therapist recommendations near Rockford, IL. Unfortunately, there are no recommendations for a therapist in Charleston, SC.

      Best,

      Malinda

      Jamie Justice, PT
      Creative Therapeutics
      Dekalb, IL
      (815) 785-5508
      tibbs1126@yahoo.com

      Judy Thatcher, PT, CFMT
      Sherman Hospital
      Cary, IL
      (847)458-1722
      judy.thatcher@shermanhospital.org

      Rhonda Kotarinos, PT
      Chicago IL
      (630) 620-0232

  30. Good Afternoon,

    This is a fantastic blog as I, a husband whose spouse is suffering from specific burning pain on mostly her right side vulva stretching down her inner thigh to just above her knee. It has started to spread to her left side but not quite a burning sensation. She has had a host of procedures (pudendal and obturator nerve blocks, vulvovaginal vestibulectomy, spinal chord stimulator) but has seen small to no relief. She has been to two different physical therapists to no avail but I would still like to be armed with options since she is very hesitant of pursuing surgery or a pudendal neurostimulator. We’re also unsure if it IS pudendal neuralgia specifically because of its constant pain that isn’t worsened or relieved with possible exception of right before her menstrual cycle.

    Do you have physical therapists or specialists you recommend in the DC/MD/VA area that maybe we haven’t run across? She’s seen Dr Marvel and Dr Goldstein and PT from Rene Lawson and someone practicing at BodyConnect in VA. Thank you!

    • Hello Jeremy,

      I’m sorry to hear about your wife’s situation. I’d like to suggest this article for your review. It may help answer many of your questions about pudendal neuralgia. Also, below is the list of therapist recommendation in MD. We do not have a recommendation for DC, or VA. I wish your wife the best of luck in her recovery.

      All my best,

      Rachel

      http://www.glowm.com/section_view/heading/Pudendal%20Neuralgia/item/691

      Stacey Devine, PT
      Devine Intervention Physical Therapy
      Eldersburg, MD
      (410) 404-4772

      Marci Marshall, PT
      Women’s Wellness Works
      Frederick, MD
      (301) 698-9214

      Miriam Graham, PT
      Rockville, MD
      (301) 881-9313
      Restore Motion

      Jan Dommerholt, PT (specializes in trigger point needling)
      Bethesda, MD
      (301) 656-0220

      Melissa Reinhardt, PT and Jennifer Ortiz, PT
      Her Health Physical Therapy
      Columbia, MD
      (443) 283-2018

  31. Dear Stephanie,

    I have IC and vulvodynia and have just developed PN to add to that list. I have had 12 sessions of PT including a 2 hour per day home programme from a PT recommended on the Pudendal hope site, who I know has trained with you, but have seen no improvement. I am also taking lyrica and amytriptaline. I really don’t know what to do as the PT does not seem very hopeful and I cannot sit, lie on my back or right hand side at all. The PT says I should have seen results by now. On top of this I also have persistent genital arousal that has started in the last two weeks. Does this mean PT is not the route for me? The surgery seems terrifying and I know it would make my IC worse.

  32. Hi Stephanie,

    Many thanks for this wonderful information. I cried tears of relief when I first read several of your posts and thought “finally someone who gets it.” Thank you for the good work you do.

    As a person with pelvic pain since 2009 and pudendal neuralgia since 2011, I have found that practitioner’s knowledge regarding PN has been so varied. I have seen several pelvic floor PTs and have yet to receive the nuanced evaluation and treatment plan you have described. Can you please recommend a qualified practitioner in the Madison, WI area?

    Also I am embarking on my journey as a physical therapy doctoral student at UW-Madison and would like to become a pelvic floor PT. During this pain experience I have witnessed the good, the bad, and the ugly in terms of receiving competent and compassionate care. Do you have any advice for someone just starting out who wants to be an exceptional pelvic floor centered provider? Any fellowships, courses, additional training opportunities for the aspiring student? Also are there any classes you took when you were a student that were particularly relevant to your work now?

    Once again thank you for the wonderful work you do. I can’t adequately communicate how much your writing provided relief and hope during dark times.

    Warm Regards,
    Wendee

    • Hi Wendee,

      I’m so glad to hear that our blog has been helpful to you. I have included our referrals for PT’s in your area below. As for coursework: We recommend the Herman and Wallace continuing-education courses. It is also helpful to shadow both PTs and MDs that treat people with pelvic pain in their clinics. We are heavily involved with the International Pelvic Pain Society, and I suggest becoming involved with the International Study for the Society of Women’s Health. Currently there a clinical residencies through the APTA that may be worth looking into. Best of luck!

      Mary Sue Walters, PT
      Sun Prarie, WI
      Dean Clinic
      marysue.walters@deancare.com

      Beth Bartelsen, PT
      Nashotah, WI
      ProHealth Care Musculoskeletal Institute
      (262) 569-6306
      beth-pt@wi.rr.com

      All my best,

      Stephanie

  33. What a relief to have found your website. The information makes so much sense to me and seems to fit for me. And it is the most sensible information I have read to date. There is so much out there in the internet that is so pessimistic.
    I have been diagnosed with IC, vulvodynia and pelvic floor dysfunction with over 30 years of suffering. I am 40. Since the age of 8 I had urinary urgency and frequency that would come and go every few months. By age 13 it was constant. What did I do? Tighten my pelvic floor. By 19 I had cystitis. No culture ever came back positive and yet I was pumped with antibiotics, then got yeast infections, then severe pain in vagina and vulva. Tested up and down for stds which was so unlikely for me I can tell you. All the time holding my pelvic floor tight. For 2 years I could barely sit had to wear loose clothes etc.
    I researched and researched. I was convinced I had IC and.indeed cystoscopy showed the pin point bleeding. That was 2008. Treatment with anticholinergics caused constipation which made matters worse. Kegel excercises and constipation have to be the worst thing for me. In 2007 my son was born. My pelvic floor had a mind of its own. It was hopping up and down and spasming all over the place. Now something interesting I read in your other article has clicked so much for me. The autonomic arousal causing the sympathetic system response, thus I thought I was going mad with anxiety. Roll on benzodiazepines and antidepressants. I DID genuinely have posted natal.depression but there was that bizzare sensation coming from my pelvic floor too.
    Eventually I found an osteopath who explained to me that my sacroilliac joint is jammed. He said it is pulling on my pelvic floor muscles. We believe that I had this since being a toddler because my mother said my left foot turned in. He says that fits with the way the SI joint is positioned.
    I went to my gynecologist About these “adrenaline rushes” I was getting and although my hormones are fine he put me on the progesterone only pill. It helped calm me down for a few months. But started coming back. 2 weeks ago I had an unfortunate experience of rough sex. My symptoms have gone through the roof. I have all the symptoms of PN including sexual arousal which to me is far worse than the pain. Finally 2 doctors in my surgery said it sounds like pudential nerve. I am seeing my gynecologist next week. I rang a PT who was very understanding and who deals in this area, but I don’t know how good she is. She said she will work with me but wants all doctors communicating on my progress. She seems thorough, but she hummed and hawed about whether my Pudental nerve was involved. She wants a firm diagnosis from the gynecologist. I would like to print out some material from this website and bring it to my doctors and the PT if that is ok.
    I have been prescribed valium to get me through the weekend which just about dampens the sexual arousal, and have a prescribed amitriptyline.
    I am convinced that all of this has arisen from a tight pelvic floor, but the urgency and frequency started so young I wonder. If the SI joined cause pressure on the nerve first and then I learned to tighten the muscles in an attempt not to urinate. I said this to the PT and.she wasn’t convinced. That worries me.
    I wonder could you offer any advice about how to approach it with doctors. I mean one of my docs said she never heard of pelvic floor causing problems with the nerve. The other had.
    I really feel my problem is a combination of SI joint dysfunction, plus hypertonic pelvic floor.
    Excuse the long mail!

    • Hi Mary,

      Where are you located? Perhaps I can recommend a few physicians in your area that have a better understanding of pelvic floor dysfunctions.

      Best,

      Casie

    • Hi Debra,

      Below is the list of PTs that we refer to in Ohio.

      Jill Dubbs, PT Rocky River, OH (216)227-2610
      Betsy O’Dougherty, PT Lakewood, OH (216)445-8000
      Michell Morris, PT Perrysburg, OH (419) 383-5040

      Best,
      Stephanie

  34. I was prescribed valium/baclofen suppositories and after eight days felt no relief in my clitoris or sit bone pain. Dr. Hibner diagnosed me with pelvic floor tension myalgia. I know he is the doctor so many wish they could see, but after asking if the suppositories should have started taking away my pain after one week of use, he said yes, and immediately said he wanted to do a clitoral nerve block and clitoral vein sclerotization. The only exam he did was a pelvic to find the tightness and a verbal history. We talked about physical therapy, Botox, then the nerve block and the sclerotization. Because I live 2-3 hours away from a therapist, any sort of massage would be pointless due to the long drive, but in various online articles he spoke about exercises and lifestyle modifications to help relieve or even release the nerve. Part III Demystifying Pudendal Neuralgia” Series, he described all the tests his patients go through before surgery is recommended. He did none of these things for me. I really like him, but wow, he skipped a lot of steps he advocated online. I did get him to change my suppositories to belladonna so hopefully that may be stronger and ease the tension. Do you have any thoughts as to why he offered surgery so quickly? Have you known exercises or other therapies that have helped patients? Every pelvic surgery I have ever had has been either unnecessary in the end, or caused more pain than I had going in. I greatly appreciate your insight and generosity in helping. I know I’ve written in before, but boy, the things that can pop up in just a few day!

    • Dear Shannon,

      I’m so sorry about all that you are going through. Unfortunately I cannot speak for Dr. Hibner. I would ask him directly why he suggested the interventions he did in the order that he did.

      As far as exercises to do at home, yes, they do exist, but they need to be prescribed by a physical therapist who is familiar with your case and has evaluated you. I cannot recommend a home exercise program without evaluating you. In particular, the self pudendal nerve glides he’s referring to can be very irritating if done at the wrong time during your treatment so I would strongly urge you not to do those if you should find them online somewhere. Perhaps you could visit a qualified pelvic floor PT for an initial evaluation at the very least even if regular, weekly visits are not doable for you.

      All my best,
      Liz

      • You are an angel for being here for so many people. I have an appointment with at the Pelvic Floor Physical Therapy Department at Scripps La Jolla next Thursday. I took your advice and have an appointment with him next Wednesday to bring up all my concerns. I am very sorry to ask another question, but I’m not quite sure what you meant by “self pudendal nerve glides.” Were you referring to the suppositories? Thanks in advance for the clarification. I again apologize for being a bother.
        Shannon

        • Liz,
          After further thinking, I realize I was not specific enough when I referred to the physical therapy Dr. Hibner and I spoke about. He did not give me any specific to do. He just told me that they existed and said, like you did, that a physical therapist was the one to speak to. So when you mentioned “self pudendal nerve glides” was that what you meant? I am so sorry for my lack of clarification!

  35. Do you see out of town patients for evaluations and beginning treatment over the course of a week or two? I live in Charlottesville, VA and I had an experience with a PT who was quite aggressive and unwilling to answer questions. Do you recommend anyone in the Charlottesville/Richmond/Williamsburg areas of VA?

    • Hello Sue,

      Our out of town programs are uniquely tailored to each patient. However, we can see out of town patients for 1-2 weeks, but we prefer to discuss your treatment options during a complimentary 15 minute phone consultation. Unfortunately, we do not have a therapist recommendation in your area. If you would like to schedule a phone consultation, please contact our office. (415) 440-7600.

      Best,

      Stephanie

  36. I am having ischial tubrosity pain while sitting and constant aching anterior to ITB with anus pain and perineal discomfort from past 6 months. I am from India and it will be very helpful if you have any information about some PTs or physicians who can diagnosis and treat such pain in New Delhi.

  37. Early in learning about PN can people still lead a normal life? I mean Tonys story says yes. So the average middle aged active man can still go about life being active with kids, skiing active physical job etc? Just knowing it may have discomfort? To young to not live a fun life. And just want to know Its okay to live and not stay still and slowly rot away. My trigger seemed quick on set but days before had extreme abdominal pain from work out that went away. Like tony. Dr. Even thought it was a hernia. But after Appt with urology they said no sounds like ” a pulled groin muslce” but I found PN researching online and fit 90% of symptoms and signs. Still waiting to meet with dr. Again. Just scared.

    • Hi JayC,

      Until you are evaluated by a pelvic floor therapist, it will be difficult to determine whether you actually have PN. Many times patients suffer from some symptoms that sound like PN, but their dysfunctions are sometimes caused by other issues such a a trigger point, or other restrictions. I would advise that you seek the opinion of a local physical therapist who specializes in this field.

      Best,

      Malinda

  38. So in the early stages of figuring out what i have going on. I’m fitting 90% of PNe signs and symptoms and just want to hear reassurance that life goes on. I’m very active (which maybe good evacuee most my pain is from sitting) but people go on and lead a normal life like tony above? I’m also a young male with an active family and don’t like to sit still. As long as I can push past the discomfort that we describe life is status quo, to young to just do nothing! Thanks

    • Hell Josh,

      With the appropriate care, life does go on, and symptoms do get better. However, “pushing past the discomfort” is not advisable. If your pain is left untreated, it may create other dysfunctions. So the sooner you seek, and commit to pelvic physical therapy, the higher your chances are for improvement.

      All my best,

      Allison

      • Josh I had symptoms of pn. Nerve pain, tingling, couldn’t sit. After about 6-9 months of pt I have no more pain . I have no restrictions. It cleared up. Seeing a good pelvic floor tp is your first step. Do not do any medical procedures until a few months of that and stop doing anything that irritates it 🙂 life does go on and you may be completely healed like me.

  39. My teenage son has been suffering for the past 6 months with symptoms that are manifesting in the areas of bladder and penis. The symptoms began 2 days after a serious soccer kick to the area. He has been followed by 2 Urologists out of Boston Children’s Hospital, A psychiatrist and social worker and a Neurologist also out of BCH who recently administered a nerve block. The bladder has had full scans – MRI, ultrasound and X-ray, along with a cystoscopy finding nothing out of the normal range. He has also undergone 3months of urodynamic studies and biofeedback therapy, all with no relief… He has been on anxiety medicine, bladder spasm meds all without relief…

    He is unable to attend school due to the urge to urinate/tingling in his penis head and base of penis. along with the recent nerve block (which temporarily gave some relief) he is taking Lyrica now for past two weeks. We are urgently looking for answers, we believe that he is anxious over the symptoms occurring while around friends, but don’t believe there are true psychological issues… we are really in need of help. I see most of the PN research for women but does this also affect men/boys. He does not have been, but urgency to urinate is biggest symptom.

    I am wondering if you have next step recommendations. Also, do you feel it would be valuable for us to make an appt. for physical therapy?

    • Hello Tracy,

      I am sorry to hear about your sons’ situation. Yes pelvic floor dysfunctions occur in both male and female patients, both young and young at heart. I recommend that your son receives an evauluation by a pelvic floor therapist. Elizabeth Lewis is located in Boston, and I have included her information below. PHRC will also open our Boston location in mid March 2015.

      Regards,

      Stacey

      Elizabeth Lewis, PT
      Lewis Physical Therapy and Lahey Clinic
      Gloucester MA
      (978) 761-3149

  40. Do you have a recommendation for PT pelvic pain specialists in the west Michigan region — Holland or Grand Rapids? Thank you for this informative site.

    • Hello Laura,

      We do not have a recommendation near Holland or Grand Rapids, but I can recommend therapists in MI. Their information is below.

      Best,

      Rachel

      Kristen Miles, PT
      Royal Oak, MI
      (248) 655-3011
      Women’s Urology Center

      Catherine Veeser, PT
      Ferndale, MI
      (248) 655-3000
      William Beaumont Hospital

  41. Hello and thank you for your blog! The information is very helpful. I live in the Oklahoma City area, and after a vaginal repair following childbirth I think I have PN pain. Is there a physical therapist whom you would recommend in Oklahoma?

  42. HI! I have found a lot of great info on your blog. I live in Nebraska and believe I also have PN and would love info on a PT in Nebraska, Kansas, or Missouri that has dealt with this. Thank you!

    • Hello Karen,

      Of course! Here are our recommendations:

      Behney, Kelly PT Gretna NE (402) 815-1689 Nebraska Methodist Hospital
      Shellhaas, Michelle PT Lincoln NE (402) 815-2061 Nebraska Methodist Hospital
      Shire, Heather PT Lawrence KS (785) 760-1850 Lawrence Memorial Hospital
      Mufich-Knopp, Linda PT Shawnee Mission KS (913) 676-2444 Shawnee Mission Medical Center
      Voight, Lindsay PT Overland Park KS (913) 317-7341 Saint Luke’s Hospital South
      Gibson, Sandy PT Kansas City MO (816) 932-3344 Saint Luke’s Hospital

      Best,

      Stephanie

      • Thank you so much! I have an appointment at the Pelvic Pain Clinic at Nebraska Methodist Hospital in April to see Dr. A. Nagy, MD who is a pelvic pain specialist who deals with PN and two of the names you gave me are PTs there! I pray that they will be able to give me some answers.
        Thank you again for your help and all the great info you are able to provide! I will update later to hopefully provide useful info to others.
        I pray for all those struggling with pain to find healing, comfort and peace. Blessings!

        • Pt has made me 95% better and continually improving. I have been where you are. It took me a year and a half to notice significant improvement, but find a good therapist and hang in there. 🙂

  43. I started one morning peeing an excessive amount of blood with cramping and pain on my right side in the back. The er said I had either a kidney stone or a uti. Put me on cipro and sent me for a cystoscopy. I started with the butt tenderness and sitting pain right after the cystoscopy. Ive had mris done and abdominal cat scans also lower back mris and transvaginal ultrasound also colonoscopy and they’ve looked down my throat. You name it I had it done. Noone sees anything. I then started with a pelvic pt that after about 2x a week for maybe 6 weeks said she didn’t feel pt was working for me and recommended I go see Dr. Marvel in Annapolis Maryland. Dr marvel then diagnosed me as having pn. However reading your article, I think I better call my pt to see where she thinks my issue is coming from. Dr. Marvel had me have an mrn which showed nothing. We then had a CT guided nerve block with steroid and a venagram done. I was pain free for maybe 3 to 4 hours. The venagram showed a larger vein in the alcocks area but Dr marvel can’t guarantee that if he takes the vein out that it will fix the problem. I have pain when I sit and pain on my sit bones. I do get cramping and sometimes it feels like I have a vaginal infection when I don’t and when this first started I had clitoral arrousal that went away. I have no bladder or major bowel issues. I am on oxycotin and lyrica and savella and ativan. Sometimes some diarrhea but can account some of that to meds. I’m not a good eater and never was. Dr. Marvel now says well we can try 3 nerve blocks in a row w/o steroid or possibly the vein removal. I’m not keen on either. Haven’t read anyone say the nerve blocks work and no to surgery if the surgeon can’t say it will work. I also tried pelvic stimulation but that didn’t work. Before all this started I was perfectly healthy other than migraines. Now I’m on meds I don’t want to ever have taken. I have 2 children the youngest being 15 and I have taken some falls to my tailbone but the last one was 6 years ago. My pt said if marvel is suggesting nerve blocks or surgery I’m kinda getting to the end of the line. I don’t want to hear that. Does this progressively get worse for everyone? Can you recommend another pt in the Maryland area? What step would you take next? I have no pain laying in bed on my belly. I’m 45 years old and don’t want to end up bedridden in agonizing pain. I’ve had to get off all the forums as they make me so depressed when I read one person after another bedridden and disabled with pain that no medicines touch. Dr marvel once told me we can handle it with medication but when I ask him what medicine works his comment was your doing it and nothing works on this pain. Really? My pain management doctor has heard of pn but has no patients with it. Can you recommend something we can try for pain? Sorry for the long post but I feel like sitting home taking pain killers doing nothing else isn’t going to help fix me. My husband and mother are optimistic that over time you body can heal the nerve. That your body is a wonderful machine and it can fix this. I need to get my anxiety and depression in check. Kinda hard though when diagnosed with this. Don’t know what my future will be. I am truly scared. Thanks for anything you can suggest.

    • Hello Lynda,

      Thank you for sharing your story. I would recommend that you receive a second opinion from a different physical therapist, especially if you prefer to avoid surgery. Below are our therapist recommendations in Maryland.

      Stacey Devine, PT
      Devine Intervention Physical Therapy
      Eldersburg, MD
      (410) 404-4772

      Marci Marshall, PT
      Women’s Wellness Works
      Frederick MD
      (301)698-9214

      Miriam Graham, PT
      Restore Motion
      Rockville MD
      (301) 881-9313

      Jennifer Ortiz, PT and Melissa Reinhardt, PT
      Her Health Physical Therapy
      Columbia MD
      (443)283-2018

      Best,

      Stephanie

        • Hello Lynda,

          Unfortunately without an evaluation, I cannot fully answer your question. I encourage you to ask your therapist after the consultation to determine whether or not surgery will be necessary.

          Regards,

          Stephanie

  44. Hello,

    I was wondering if you know who i can go to for help in Vancouver Canada . I am also willing to travel across the country if needed.
    I am also considering trying Shockwave therapy. Have you herd good things about that ?

    Thank you for your time

  45. Good evening Stephanie,
    I was wondering if you have any pelvic physical therapist recommendations for me for the elkton Maryland area. I am scheduled to see a new one on Thursday. It is called ATI physical therapy and her name is Cecile Gibbs. Is she on your list? And if not can you recommend anyone close by. Your help is greatly appreciated.
    Lynda

    • Hello Lynda,

      I do not believe that Cecile is on our list. Here are therapists that we recommend in your area:

      Stacey Devine, PT
      Devine Intervention Physical Therapy
      Eldersburg, MD
      (410) 404-4772

      Marci Marshall, PT
      Women’s Wellness Works
      Frederick MD
      (301)698-9214

      Miriam Graham, PT
      Restore Motion
      Rockville MD
      (301) 881-9313
      Jennifer Ortiz, PT and Melissa Reinhardt, PT
      Her Health Physical Therapy
      Columbia MD
      (443)283-2018

      All my best,

      Stephanie

  46. Stephanie thank you for your reply. All of the pts listed are so far from my home. Is there anything I can ask Cecile on Thursday to see if she is treating me correctly and to see if maybe she uses the same techniques you use.

    Thank you for all of your input. I really appreciate it.

  47. Liz,

    I have been suffering for 18 months with the stabbing, pulsating, and burning pain in pudendal area. Cannot sit for very long, except on the toilet as you describe. First diagnosis was that it might be torsion, negative results. Next prostatitis, Levaquin prescribed which has led to other problems. I have had laminectomy for L5/Si nerve sleeve and some think it was related. Recent cortisteroid injection in that area did nothing. I would like to find a PT in Houston, Texas who could concentrate on that area. If you have anyone who might help that would be great. I am toughing it out but it takes its toll mentally. Thanks.

    • Hello Bill,

      Please see the list below; it is a list of PTs that took our course in TX. Perhaps one of them will be able to help you. 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.

      Nieves Alfredo MD Chattanooga TN 4234901136
      Kubic Melissa PT Chattanooga TN 4237788660
      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

  48. Bill,

    I just wanted to let you know I was suffering like you and they didn’t know why. PT helped me so so much. I am now 100% but it takes time and a good PT. For me I had scar tissue they had to break up.

  49. I was diagnosed with Pelvic Floor Dysfunction by my urologist and sent to PT. My symptoms were urethral pain,intense urinary urgency and pressure and vaginal fullness. My therapist said my pelvic floor was very tight, I had several trigger points and connective tissue restrictions. I have had PT twice weekly for approximately 10 weeks. She tells me my muscles and connective tissue have improved and I do feel my intense urinary urgency has improved. My concern is within the first 3 weeks of PT I began to develop a sharp burning pain in the crease of my right buttock where she states my AClock canal is located. It has since progressed to both sides of my rectum, labia, buttock and sometimes my hips/thighs. I have pain/pressure with sitting and it tends to worsen my symptoms. They vary in severity day to day and are worse as the day progresses. My therapist tells me I have PNE and from all I have read it does appear I have some form of PN. I am confused that these symptoms appeared after starting PT as I had no burning, numbness or tingling prior. Is this possible? Could something during my PT trigger this? My therapist is very nice but doesn’t seem to have an answer. I would appreciate your opinion. Also if you could recommend a physician and PT in Des Moines, IA I would be grateful. My PT appears to be informed but I have no basis for comparison and she can’t always address my questions.

    Thank you,
    Amy

    • Hello Amy,

      Kelly Brown, PT is located in Des Moines, and may be able to assist you. Although not affiliated with our practice, Kelly has taken one of our annual courses on PN, where therapists are trained to assess and treat patients much like our own PT’s. Her contact information is located below:

      Kelly Brown, PT
      Des Moines, IA
      (515) 875-9706
      kbrown@iowaclinic.com

      Regards,

      Stephanie

  50. Hi Amy,
    I am from Nebraska and have some info in a wonderful Doc in Omaha, NE. Doc. Annamarie Nagy at the Methodist Women’s Center in Omaha. She specializes in pelvic pain. Look her up online. She might be able to help you with a diagnosis. I went to her in April and have a follow up in August. I have been doing PT since my 1st visit in April and I am improving! I thank God that there are Doctors and PT’s out there that are focusing on pelvic pain and working together to help us get rid of our pain. Blessings and prayers to you! Karen

  51. Hi Stephanie,

    You article above was very informative. I have been diagnosed with pudendal neuralgia. My symptoms began 3 years ago after repeated prolonged sitting in a chair with poor cushioning. I have been receiving PT continuously for the past 2 years. PT does offer temporary relief. I have had 2 pudendal nerve blocks (which I felt were unsuccessful). I have also had Botox injections in the pelvic floor w/ minimal relief & have taken large doses of Nortriptylline, Gabapentin and Celebrex with minimal to moderate relief. My PT recently recommended Valium suppositories. This gave the best relief that I had experienced since being diagnosed. I see a pelvic pain MD in addition to my regular GYN doctor. My regular GYN actually prescribed the Valium. My pelvic pain MD did not seem very pleased about it when I told him about it. He usually only prescribes the suppository for 3 months. I’ve been using the suppositories for about 4 months. I’m afraid that when I stop them the pain will intensify again. My therapist suggested that I stay on them to use with flare ups. I’m considering looking for another pelvic pain MD since his ultimate goal does not agree with mine. I’d rather take the suppositories than be drugged out on the Nortriptylline & Gabapenton. Since beginning the Valium, I was able to decrease the dosage of the Nortriptylline & Gabapentin. As a result, I feel more alert. I would love to hear your response. Would you add me to your mailing list. I live in the Wash, DC area.

    • Hello Veronica,

      Thank you for sharing your story! Are you able to travel and perhaps receive an evaluation for a second opinion. Without an assessment, it is difficult to give specific advise for you. Please contact our office for more information. (424) 293-2305.

      Regards,

      Stephanie

  52. I live in huntsviile alabama area. I have PNE. I have been to see dr Conway in june of 2013 after having sudden onset of penal pain in sept of 2012. He did some tests and confirmed that I had a pudendal issue. Ive been seeing a PT and have had some positive results. I get better but then the pain comes back. The PT I see isnt really trained for PNE but is trying his best. Are you aware of any trained PTs in my area I could see?

    • Hello Tony,

      We do not have a therapist recommendation for Alabama at this time, but if you are in the area or willing to travel, We recently opened an office in Waltham, MA. Please contact us for more information. (781) 577-6648.

      Regards,

      Liz

  53. Hi Stephanie, thank you for trying to help all of us. can you recommend a PT in the buffalo new york area that deals with men
    thank you so much

  54. Hi,
    I am living in Ireland. I was diagnosed with pudendus neuralgia. I am on a long waiting list to see a pain specialist to possibly infiltrate the nerve for pain relief. Are you aware or recommend a trained PT in Ireland?
    Thank you very much.
    Ursula

  55. I am currently seeing Anuja Shah in San Marcos California. She has tried to find vaginal and rectal trigger points, but so far nothing has recreated my pain. Because my pelvis periodically has to be adjusted, sometimes very slightly sometimes more so, by my chiropractor, she is trying to decide whether that or pelvic floor tension (which is not very bad) could be the cause of my anal sphincter throbbing and pain and sometimes clitoris pain, and also nerve tingles along the right and left sides of my (please forgive me for this) buttcrack. I had suffered from severe clitoris pain before, but with relaxation, pain suppositories, and physical therapy, my pain went away. Unfortunately the sphincter pain started about six months later. I’ve said all of this because as I am at home, and she is unable to see me for a few weeks, I am unable to ask her a question that I hope you can help me with. Because of the areas on my buttocks, and sphincter, where I have pain, I did some research, and the word ‘perineum’ kept popping up. Unfortunately, some sites say the female perineum is only the area between the vagina and the anus, while other sites say it goes from the coccyx, all areas that a bicycle seat touches (which is not too clear to me) and up to the mons pubis.
    1. Is there any way you can describe or have a diagram that shows where this area is? I would like to know so I can distinguish between pain caused by my back, and it possibly being caused by my pudendal nerve.
    2.Dr. Hibner gave me more pain suppositories but my pt isn’t too keen on me using them because she says then I won’t know if the pt and the at home exercises are working. Do you have any thoughts on the subject?
    Thank you so very much for your time. I will be printing out your articles to bring to my next appointment.
    Most sincerely,
    Shannon

  56. Stephanie;

    I see that these replies are quite old and I’m not sure if this site is still active. Do you have recommendations in the Toronto,Canada area?

    Thanks
    Sheri

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