Pudendal Neuralgia – There is Hope!

Who’s even heard of Pudendal Neuralgia? How about Pudendal Nerve Entrapment?

(** Added 2/27/15 Please also read the newest blog: 5 Things We Wish You Knew About Pudendal Neuralgia)

During my career, I developed an interest in working with patients with pudendal issues.  I joke around that I am famous in small circles – the “pudendal circle” is one.

There’s a tremendous amount of confusion about the diagnoses of Pudendal Nerve Entrapment, Pudendal Neuralgia, and Pudendal Neuropathy. Moreover, though it is a VERY important nerve  in the body that controls bowel, bladder, and sexual function, many physicians will admit something along the lines of “I just don’t deal with that nerve”.

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Here’s the typical course I see many women and men go through on their “pudendal journey”:

1. You realize you have symptoms in the genital or buttock region that are not so pleasant such as (from tipna.org): 

  • The chief symptom is pain in the area innervated by the pudendal nerves. Sitting become intolerable.
  • The pain is lessened when laying or sitting on a toilet seat.
  •  The pain can be delayed and stay long after one has identified the source of aggrevation (sat too long, walked too far, did too much, etc.)
  • Usually, the pain gradually increases during the day and is the worst at night. Many PNErs feel their best upon waking in the morning.

2. You go to your health care providers to ask about this condition.

Unfortunately, physicians and nurses don’t spend a lot of time in school dedicated to learning about the pudendal nerve and either don’t have the resources or comfort level to treat it; or the patient may go misdiagnosed for years with labels of other conditions such as –  prostatitis, bursitis, or vulvodynia.

OR/AND

2b. You begin the pudendal Google search mania.

Many patients go on a variety of websites that offer message boards. The posted messages and live chats can leave even the most upbeat, optimistic person in a pudendal funk. There are a lot of doom and gloom stories without adequate information or hope for treatment. However, I have seen some patients find hope by discussing their concerns with people going through the same struggle. Keep in mind that there are many successful patient stories. The most important thing to remember is that support can be positive. Find good information (see links provided at the end of the article) and keep hope alive.

3. You begin the “pudendal nerve tour”.

Out of desperation, patients seek out dramatic surgeries even if it means traveling across the country. There are a handful of surgeons in the US (and another few across the world) that do Pudendal Decompression surgery. Without going into the gory details – it’s the type of surgery you do when you have exhausted all other conservative options and there is a strong conviction you have true entrapment (repeated and long-term nerve compression). It should not be the starting point!  In fact, there’s a good chance you may simply have an irritation of the pudendal nerve from an inflammatory process or muscle spasm or connective tissue thickening near the nerve.

The real pudendal tour should include a thorough examination from a physician in specialties such as Neurology, Gynecology, Urology, Colorectal- particularly someone who is familiar with pudendal neuralgia and the differential diagnoses. It’s also highly recommended to have an examination and possible treatment from a pelvic physical therapist who specializes in the treatment of pelvic pain and pudendal neuralgia. If you go to an orthopedic physical therapist, there’s a good chance they will not know how to treat conditions associated with the pudendal nerve. Look for pelvic therapy specialists who understand pudendal neuralgia (the Pudendal Hope website below lists these specialists).

Over the years, patients have suggested there should be more information on the web offering good resources and optimism surrounding pudendal nerve conditions.  If you suspect you have pudendal nerve issues there IS hope! We will continue to provide resources and information.  Look for an upcoming blog with a listing of clinicians and resources regarding pudendal nerve conditions.

Update 12/25/12:

* Here’s a great article with information about Pudendal Neuralgia: Click HERE

* Check out these websites as resources and references for information:

TIPNA

Pudendal Hope

* Tracy Sher and Loretta J. Robertson are now teaching a full Pudendal Neuralgia course to health professionals nationally and internationally: Course Info


tracyTracy Sher, MPT, CSCS
  Private Practice Owner in Orlando, FL; International Speaker/Faculty. Passionate about treating pelvic pain and all pelvic floor disorders – bowel, bladder, sexual function. Secretly hoping to be a circus clown or rock, paper, scissors champion some day.  Check out Pelvic Guru on Facebook or Twitter @pelvicguru1

No Comments

  1. Pelvic Guru April 3, 2012 at 2:29 am - Reply

    Here’s another article that explains more about Pudendal issues. http://www.medicalnewstoday.com/releases/54832.php

  2. Sunil January 19, 2013 at 9:48 pm - Reply

    There is hope a new discovery has been made for people suffering with PN in the British Journal of Urology International. http://www.bjui.org/ContentFullItem.aspx?id=838&SectionType=1&title=A-musculoskeletal-approach-for-patients-with-pudendal-neuralgia:-a-cohort-study

    • Pelvic Guru January 19, 2013 at 9:52 pm - Reply

      Thanks very much for passing this on. I know Peter and have discussed these techniques with him. It’s certainly something to consider, but some patients require further treatment and management beyond this program. Thanks again for sharing.

      • Helene November 9, 2013 at 10:37 pm - Reply

        Omg!! I need help ,, I live in Long Island, NY. About 45 mts from NYC. I need to find a dr that can help with my pudendal neuralgia which goes hand in hand with my peripheral neuropathy. The numerous neurologists and rheumatologist have no idea what to do. Any dr recommendation would be greatly appreciated. I have been in so much pain for over two years!! PT has not helped at all,,

      • Sunil January 28, 2014 at 11:44 pm - Reply

        Yes as I have discovered. I have a list of PT’s and doctors that have moved me a head and now I have stability of the SIJ and pain is down to near zero at times. With a few remaining issues I feel I will make it.

  3. Ashleigh April 14, 2013 at 11:47 am - Reply

    I cannot open the link for the article. Could you post the title or another way to search for it? Thanks so much!

    • Pelvic Guru April 14, 2013 at 11:50 am - Reply

      Ashleigh- to which article are your referring? There are a few article links on here. I’ll be happy to try to help with it once I know which one.

      • Ashleigh April 14, 2013 at 3:20 pm - Reply

        Sorry I didn’t specify 🙂 The original article at the bottom of the post where it reads: Here’s a great article with information about Pudendal Neuralgia: Click HERE (under the updated 12/25/12)

      • Pelvic Guru May 12, 2013 at 2:02 pm - Reply

        Ashleigh- I’m sorry for the long delay. I see exactly what you mean. The link is not working anymore. Let me see what I can do to find the same information. Thanks for pointing this out!

      • Pelvic Guru May 12, 2013 at 2:04 pm - Reply

        Here’s a link that should be the same article, but in a different source. I’ll update it as well in the Pelvic Guru post. http://www.obgynnews.com/views/master-class/blog/pudendal-neuralgia/95b5639640fc33ca0904b596c45007b5.html

      • Anonymous May 3, 2015 at 5:15 pm - Reply

        I was treated by Professor Robert twice in Nantes France am doing better but going back 3rd time to improve.
        Gabriel
        Beverly Hills cell 818.941.8700

    • Sunil August 30, 2013 at 9:04 pm - Reply
      • Anonymous April 26, 2015 at 4:44 pm - Reply

        Hi. I suffer from severe PN. How have u been. Is PT still helping? What symptoms do u experience with your PN? I’m curious because I am wondering if it could possible help me. I have vaginal, rectal and clitoral pain. I also have really bad SIJ dysfunction. Hope to hear back from you.

      • GP April 26, 2015 at 4:45 pm - Reply

        Hi. I suffer from severe PN. How have u been. Is PT still helping? What symptoms do u experience with your PN? I’m curious because I am wondering if it could possible help me. I have vaginal, rectal and clitoral pain. I also have really bad SIJ dysfunction. Hope to hear back from you.

    • Maria October 1, 2015 at 7:27 pm - Reply

      Testing

      • Pelvic Guru October 10, 2015 at 9:46 pm - Reply

        Hi Maria! I’ll have to investigate this and get back to you.

  4. Ashleigh May 18, 2013 at 6:11 pm - Reply

    Thanks so much!

  5. Megan June 24, 2013 at 11:04 am - Reply

    this is what I have… it has been a year of running doctor to doc… lost my job…. was misdiagnosed with Interstitial Cystitis and vulvodynia…. can I please speak to someone on what my next step should be????? I am in Hartford, CT and afraid there will be no one here to treat this…..
    I am scared and very alone….. if there is anyone I could talk to as well for support that would be helpful…
    thank you…
    warmly,
    Megan

    • Anonymous July 1, 2013 at 6:04 pm - Reply

      i have it too

    • Anonymous July 15, 2013 at 10:39 pm - Reply

      CM
      There is an excellent doctor in Pennsylvania that might be worth seeing. Dr. Robert Echenberg, with the Institute for Women in Pain. It looks like a 4 hour drive from Hartford, but honestly, it would be worth it to see someone with excellent knowledge of chronic pelvic pain and the conditions that can cause it. I have PN from my vaginal delivery and am followed by a close colleague of Dr. Echenberg (across the country). Best of luck. It is a hard road and few people have heard of it. Be careful what you read on the internet, particularly patient forums for pudendal neuralgia. It can be depressing, and you may not have the same situation those patients have.

      • Jaycob January 6, 2014 at 5:37 pm - Reply

        Thanks Lynne, and I’m happy to see you here! There have only been a few comments on the other site and most are from the U.S. or Canada (me). I was happy to have this site too baeucse I was freaking out at the thought of losing touch with everyone. I still think we need a designated site where we could meet in addition to this one, just in case.Jacqui I’m not surprised you would be the kind of person who would open your home to a homeless dog. She sounds adorable and looks loved and happy.

    • CM July 15, 2013 at 10:49 pm - Reply

      You should find a well qualified pelvic floor physical therapist, plus see a pelvic pain specialist or urogynecologist. Try not to read the patient forums about pudendal neuralgia on the web, as they can be depressing and may not apply to you. You might try checking the International Pelvic Pain Society website and searching for providers in CT. Best of luck. I have PN from vaginal childbirth and know the hell that diagnosis represents, but luckily am finally improving after lots of PT, medications, and other treatments.

      • peggy August 15, 2013 at 8:28 pm - Reply

        What type of meds and other treatment. I may need to see a physical therapist.

    • peggy August 15, 2013 at 8:38 pm - Reply

      I have had this since 2011. I am on gabapentin and have had nerve block shots. I have learned how to sit, but at home i mostly lay down. Exercising is done. Walking is about the only thing i do. This really sinks. I am 54. I am not happy with my doctor, and an trying to find another one. I too feel isolated, but have a wonderful husband. I an glad i found this site.

      • Heartland Yogini August 27, 2013 at 9:04 am - Reply

        Dear Peggy: Our cases sound quite similar. I’m 55, have had numerous pelvic surgeries, including surgery last year for pelvic congestion syndrome – basically, I had several valves in veins in my pelvis which were not functioning properly. I’ve had pelvic pain since 1987. My husband is of great support and perspective. We had a consultation with (another) pelvic pain specialist yesterday. His style of communication is lacking (to say the least!) but he is quite knowledgeable. Today, I’m just trying to digest everything he said. His initial recommendation was to get a seat cushion for pudendal nerve inflammation, and begin working with (another) pelvic floor physical therapist. He has also prescribed Baclofen suppositories – to be used either vaginally or rectally. He wants me to follow this protocol for 6 weeks then return to his office. At that point, he want to do trigger point injections. I’m not sure I’m 100% onboard with the trigger point injections but am considering it. I have a couple of other doctors, including my PCP, that I want to discuss this doc’s findings with. Good luck to everyone who has pain; esp., chronic pelvic pain.

    • Anonymous November 7, 2013 at 8:21 pm - Reply

      Hi megan, my name is kim I live by plattsburgh NY i’ve had this prudendal nerve problem since my vaginal repair surgery back in March of 2010 so I’ve done all the traveling all the Dr.s that there is and only with pain releif with a pain manage Dr. with whom I’m very grateful to for the med’s do help once you get over all the med’s you have to take and the trial and error of them, But I’m happy to say I’ve had hemmoriods as well and never went back to my Dr. who treated and banded them many yrs ago and went back to him said no hem’s . Didn’t find him truthful, so I search another state and now I have found the most wonderful and I might say a little handsome , He new right away what it was – he wanted to do some testing which involved a 15 min. procedure and I fail to do so wanted second a pinon , waited 2 months to find out my OBGYN said no more surgerys’ so I call this other Dr. and said I’m going to cancel -well 1 more month went by and I just cant seem to find and comfort to my soul. So I told my husband about the Dr. that I had seen 3 months ago and he said let me come with you make appoint, and I’ll be there with u. so weeks later where there Dr’ come’s in explains to my husband I broke down crying bemuse he was the first Dr’ that new what it was and all my symptom without telling him not one of them so we made the date 2 day’s later in hospital – out within 1 1/2 hrs. later I feel nothing next day nothing 2nd and 3rd all the way to the 6th and I feel something a little ace then same for day 7 8 just had to take tramadol those day’s then wham sunday went to empty bathroom waste basket and it felt like I fell of a roof, pain back in full force – so monday I call this Dr. and he had me in the nexted day told me it work was what he thought it was now step 2 numb again and also inject med’s in both nerves on both side , he could of did it saturday but I have my grandson, so tuesday it is and I can’t belive I’m waiting till tuesday but my grandson I only have every other weekend so he is my heart. So I offer you this Dr. Abedeely Saranac Lake NY, and if you need a place to stay you stay here I have a lovely home and anyone that has gone threw what i’ve gone threw need all the help they can get I live alone at this house and I go and stay with my husband at his so at this home 2 -3 day every other 8=10 day and I do truly offer you my home and company if you would like going to the Dr’s if interested let me know. kim

      • Maria July 18, 2014 at 4:47 pm - Reply

        Hi Kim, my name is Maria, I’m 52 and I live in Michigan. First, I would like to say that your note to Megan was so sweet and it made my day. I’ve been suffering since October, 2012. I have gone to a dozen of doctors, had injections, many ER visits for relieve of the pain, been hospitalized and had an ultrasound, CT scan and 2 MRI’s. All of the doctors were focusing on back pain and I kept telling them that’s NOT the problem. I literally had to tell them where my pain was and I mentioned that I believe it’s a pudendal nerve entrapment. They all ignored me and I was getting very frustrating. I finally found a urologist that knew what it was and she had her own “team” that I could work with. I was a little excited, but still skeptical. I went through another series of nerve blocks and that didn’t work, so she told me about a surgeon that she knew in Minnesota. His name is Dr. Antolak from the MAPS pain clinic. I made an appointment for a consultation and my mom and I flew over there In Sept. of 2013. He did a pin prick test and a nerve block with no anesthesia and I about hit the roof. I guess he learned that by working with some doctors from France. You can watch his YouTube video at http://www.youtube.com/watch?v=tKpCIIxAfoI. Anyway, he told me I needed the surgery on both sides. So, I went back in Nov. 18, 2013 and had the surgery. I had to stay in the hospital for 2 day and my mom and I stayed an extra 3 days before I could fly home. Well, I’m very disappoint in the results. I know he said it may take up to a year to heal, but when I left I didn’t get any aftercare plan except to try and walk 10 to 20 minutes a day and a gliding exercise. I was faithful at doing what he said. He also told me I shouldn’t have a problem urinating or having bowel movements right away. After about 3 weeks, I believe the problem got worse. I know the pain meds make you constipated, but it was really bad. And I did read if you have problems with constipation, call him. After about 5 days or so trying to get a hold of him, he told me “oh, that’s not good. You should eat more fiber, fruits and veggies.” Well duh…I knew that. He also told me to call back in a week and let me know how I’m doing. Well, I called and nothing changed. Then he called and said it might be another nerve that’s entrapped. At that point, I began to start over again. I found a really great doctor that did a couple of nerve blocks in April and I was feeling pretty good. I was scheduled to see him again in August, but meanwhile I had to switch insurance and his office doesn’t except it. So, basically I’ve been pretty much bed ridden and I’ve about had it. That’s my story and if anybody can give me some advise, I would really appreciate it!!! Take care!

      • Josephine McDermott January 27, 2015 at 6:06 pm - Reply

        Can you please tell me if this Dr diagnosed and successfully treated your pudendal problem for you I have pain which is now being thought as pudendal nerve entrapment am I correct in thinking that is what you have. I have been suffering for the past 6 years and had back surgery told it was that was causing my pain are you around new York as if I thought I could get relief I would travvel there as I cannot work any longer am offon pension pay rate. I live in IRELAND but would still try and make the effort to get ther even if i had to borrow the money as I cant just live with this anymore please do reply and clarify all this for me as I am thinking I may be picking it all up wrong Would so really appreciate a reply would be heaven thanks Josephine

    • Anonymous December 10, 2013 at 1:46 pm - Reply

      Hi,megan im cris i work in but nx month i decide to go home in the phillipines im sick also i lost my job 2 i have neuralgia 2 im scared i dont have i dea fod the treatment this is my email add krizy2932@yahoo.com i you someone 2talk 2 i need some to talk to

    • Cris December 10, 2013 at 1:51 pm - Reply

      Megan,here my email add krizy2932@yahoo.com i have neuralgia in my scrotum had me please i need someone to talk also

    • Mary Nephew June 16, 2014 at 6:23 am - Reply

      Megan,
      You can contact me at MaryLHarley@yahoo.com.
      Sincerely,
      Mary Nephew

    • Mary Nephew July 11, 2014 at 10:31 pm - Reply

      I’m more then willing to provide support to other people w/ Pudendal Nerve. I’ve had this condition for approx. 10 years. I’ve had the injections & the surgery. Feel free to contact me if you wish. My email is marylharley@yahoo.com.

      • Anonymous September 30, 2015 at 5:38 pm - Reply

        Had the injections did not work yesterday had Botox so far no results pain in rectum for 2 years beyond myself started with removal of hemroids. 2 years ago

    • Mary May 15, 2015 at 1:11 am - Reply

      Feel free to contact me anytime! I’ll get you connected with the list of doctors & PT. I’m also willing to chat one on one via email. I’m not a therapist, just another PNE sufferer. My email is marylharley@yahoo.com.

  6. David miller August 29, 2013 at 9:18 pm - Reply

    My mother-in-law has been diagnosed with pudendal neuralgia. We are in kansas and trying to find the best physician and treatment. Any suggestions. She has her bags packed and ready to travel anywhere to find relief. She is considering Dr. Filler in Santa Monica?

    • Pelvic Guru August 29, 2013 at 9:26 pm - Reply

      Consider Dr. Butrick in Kansas City or Dr. Hibner in Phoenix, Arizona.

      • Gladshoe August 29, 2013 at 9:43 pm - Reply

        i have PN and have been on gabapentin for almost two years. Several months ago I started having goose bump feelings in my legs. Can PN cause that or can gabapentin cause you to get neuropathy? My face has also started feeling like my legs. Don’t know if anxiety is taking over. Any help would be appreciated. Peggy

        Sent from my Samsung Epic™ 4G TouchPelvic Guru ™ wrote:

    • Mary Nephew June 16, 2014 at 6:25 am - Reply

      The doc in CA isn’t supposed to be the best. Contact me at MaryLHarley@yahoo.com & I can help.

    • Adele Casden February 2, 2016 at 7:34 am - Reply

      I’m in a group called Hope pudendal Nueralgia. From the recommendations on Yelp & physical therapists I’ve spoken to, Dr.Filler is not the one to go to. There is a website with recommended doctors. Dr. Costellanos, in Phoenix, Arizona is good, & there are a few in New England & New York area recommended. There is a website from the Pudendsl organization that can help you. Lots of people get the surgery, but not all get better (last resort). Some get much better from pelvic physical therapy. There are lots of different pain meds to try. I was able to get by, poorly on Fentynsl patch, but it’s no longer helping me as much, so I need to change medicine. Valium, Cellebrex, Norco, vallium suppositories (from compounding pharmacy 10 mg) help. Also Cymbalta, amitriptyline, & other pain meds can help. Everyone has different tolerance to different medicine. Temporary help is Botox shots & blocks (guided). It’s hard to find a good Dr & you need a pain Dr for pain medicine. I haven’t found a solution. Some have found help from pain stimulator installed, that helps. Good luck!

  7. Gwen M August 30, 2013 at 2:24 pm - Reply

    Do you happen to know of any doctors who treat pudendal neurolgia in men?

    • Anonymous June 14, 2014 at 12:42 am - Reply

      Have you found any help?
      I am experiencing this problem as well

    • Mary Nephew July 11, 2014 at 10:33 pm - Reply

      Gwen,
      Email me & I’ll get you to the list of doctor. Marylharley@yahoo.com

      • Lovene July 9, 2015 at 8:11 am - Reply

        Please help my relative. He has been suffering with pudental nerve pain for 3 years. He is up almost every hour during the night with severe pain. He is exhausted!! We live on east cost of US. Is there anyone that is a specialist with the pudental nerve pain for men. We have been to John Hopkins, Cleveland, Penn State Hershey, and others in between. He has had injections to block nerve pain, and today he is having another surgery. He has taken all kinds of meds including suppositories (costs $2,000 per month) which helped for a short time. Please give us some hope here.

        • Anonymous July 10, 2015 at 9:49 pm - Reply

          Sorry To hear about the problem , have you you tried the forum pudendal hope , there is more info that might help , here is the link
          http://www.pudendalhope.info/forum/

          • aircraftguru July 11, 2015 at 12:20 am

            I rarely post …. I’ve had this problem for 8 years without a way to stop the pain. However, I wanted to share something which may hold some promise for this. In the June 2015 issue of Popular Science there is an article on Stem Cell Therapy. The author had back pain for several years without getting a solution … He heard about Stem Cell Therapy and investigated …. Found a doctor in California who has this procedure…. The author contacted one or more of that MD’s patients to see how well it worked …. And the author flew to California and had the procedure done. In a few weeks his pain was mostly gone and a year later is all gone. I’ve contacted my Pain MD and he knows a Pain MD near Salt Lake City … And has referred me to him….. That MD’s office director called and interviewed me a few days ago. Insurance does not cover the procedure. The cost may be $6-8,000 and may require I be there for 10 days. The procedure is called Regenexx. I am presently in the investigation mode. There is an MD near Denver with this too. Just do a Google search: Stem Cell Therapy, Regenexx

          • karen Beaver July 11, 2015 at 7:08 am

            Another reply I got recommending the http://www.pudendalhope.info/forum/

    • Mary May 10, 2015 at 3:40 pm - Reply

      To all of those that are looking for doctors please see the website I have attached to this comment. All you have to do is look up your state or the one closest to you. It also lists physical therapists.
      I have also listed my email on here for those who are looking for someone to talk with one on one. Again it is marylharley@yahoo.com. I’m a fellow PNE suffer, but I can give you a few tips & tricks to do while waiting to see a doctor.

      • Anonymous April 13, 2016 at 9:21 pm - Reply

        Mary I can’t see an attachment for the list of doctors can you help?

  8. Anonymous October 10, 2013 at 1:18 pm - Reply

    It seems like this is more common in women. I’m male and have been suffering for about 5 years. I get Botox injections 4 times a year in my genitals and take gabapentin and tramadol every day. There is a great dr in Albany NY but all he’s interested in is the Botox and won’t look at other options. The other dr’s I find all seem to be for women only. My quality of life has plummeted and I need to find out what other options I have available. Can anyone help me?

    • Anonymous June 14, 2014 at 12:44 am - Reply

      How are you going? 33 yrs and counting for myself.

      • Sunil June 16, 2014 at 12:15 am - Reply

        I have improved no end after nearly 40 years of pain, suffering, being ripped off by the medical profession. I have more then relief and I feel I am being cured.

        I have had a combination of treatments and had the SIJ treated by Peter Dornan (his book will be out soon), was the key to starting the journey. Post his treatment all the rehabilitation work I have done with other professionals has moved me forward. I do light weights, yoga and core stretch work, Gluteus work for the medius and maximus, as well as have regular rehab work and taping.

        My core has got stronger without doing sit ups that were making things worst, the yoga has really helped me as I found good teachers who knew what they were doing. My hip is not longer wobbling and feeling as if it coming out. All in all, I have got next to no pain, there is strength in my body the hip and pelvic area seem to be supported by the muscles and muscle tone has improved. My Erectile Dysfunction issues have reduced, as has urgency and pain in the hip flexor has nearly gone.

        I wish I could provide you all with what I am doing and who I have been seeing to get this result. I was 16 when I had my injury.

        • Mary Nephew June 16, 2014 at 6:16 am - Reply

          Dear Sunil,
          Please feel free to contact me at MaryLHarley@yahoo.com. I would be extremely interested in the treatments you’ve had!! I would LOVE to be pain free again someday!!
          Thank!
          Mary Nephew

    • Nancy August 17, 2014 at 5:57 pm - Reply

      My husband is in the same boat. He’s also been struggling for about 5 years. We have seen neurologists, urologists, Dr. Stanley Antolak in St. Paul, tried deep tissue message, trigger point release, chiropractor, Physical Therapists and Acupuncture. He spends most of his day in bed with severe plain. We’ve heard nightmares about the surgery Antolak proposes. Please if you’ve discovered something, let me know. championstrophy@hotmail.com

    • Mary May 10, 2015 at 3:41 pm - Reply

      Hi! There’s a surgeon in TX & one in Toronto Canada.

  9. Leo October 16, 2013 at 2:24 am - Reply

    Have had this scourge for 8 years. Misdiagnosed for 2 years as prostatitis for 2 years and 6 years for interstitial cystitis. Pain increased so much that my urologist suspected spine issues and found stenosis, degenerative disc disease and bulging discs. My pain doc said that I needed to go to UCLA or he would stop Percocet and fentanyl patches. Within a day seeing their urologist, neurological surgeon and pain mgmt guy I had potential PN diagnosis. Since then, I had 4 nerve diagnostic blocks, 4 steroidal injections, and pudendal pulsed radio frequency procedure. Couldn’t handle the spacey feeling from lyrica and gabapentin, need to be articulate for work. I would google and see who is close to you with some expertise. Personally, I am almost at wits end myself. Strange to mg to see the suggestions to read “get inside your head books”, they must not hurt that bad, I can’t pick up and book and comprehend when I am this much pain.

    • Bill August 3, 2014 at 10:10 am - Reply

      Hi Leo, who does the pulsed radio frequency procedure? Thanks. You may want to check out Dr. Eric de Bisschop in France. He developed a simple pn surgery using a scope with a balloon on it to clear tissue away from the pudendal nerve. He has a high rate of success, but he only operates on people that pass his pudendal entrapment tests. There are electrical tests which he developed to signal entrapment, and his wife developed a way to test the blood flow in the pudendal artery at different points. Since the artery travels near the nerve, if the artery is pinched at a certain point, the nerve will be as well. And, at least a few years ago, he was only charging about $4000 for everything … the tests, the surgical costs, as well as a 10 day stay in his clinic post op.

      • Nancy August 17, 2014 at 5:59 pm - Reply

        Have you had the surgery, Bill?

  10. Anonymous October 29, 2013 at 5:43 pm - Reply

    Is there a list of doctors somewhere that can treat this?

  11. Joy Bennett November 9, 2013 at 12:51 pm - Reply

    I live in the Phila., PA area and am looking for a good doctor to help. Any suggestions ?

  12. CM November 11, 2013 at 12:21 am - Reply

    Joy, go see Dr. Echenberg in Bethlehem, PA. For other doctors, try going to the IPPS website (International Society for Pelvic Pain) and search for your area. Best of luck.

  13. Tom November 16, 2013 at 4:28 pm - Reply

    Can anybody recommend a good doctor located around central NJ that can, hopefully, help me? I believe I have Pudendal Neuralgia too and have been suffering for more than 7 years. Please!

  14. graham November 26, 2013 at 2:52 pm - Reply

    great site for help. well done. Graham England.

  15. graham November 26, 2013 at 2:57 pm - Reply

    does anybody know where i can get treatment in England, unfortunately @ the moment i am being treated for Prostrate Cancer, i’m in the low risk category, and about to decide which treatment i should have ,Radiotherapy,possible Cyberknife, or Robotic assisted Surgery. just wandering if the PCa is the underlying cause of this pelvic pain, but it is only present when i sit down. I’ve been told my prostrate is enlarged,so this might be the cause of the pain???anybody got any ideas?

  16. Anonymous December 10, 2013 at 9:25 pm - Reply

    Have a 18 year old son . we live in AR and can not find help. Have one of the finest med centers in the world UAMS but no one deals with PN : Has has had 2 varicele surgies and two nerve block. Has had to quit college baseball and if anyone can help we would be forever grateful

    • Pelvic Guru December 10, 2013 at 9:34 pm - Reply

      Look up Leah Tobey- she’s a pelvic physical therapist in Arkansas (not sure what town). She may know resources or be able to help directly. If you can’t find her via google, reply and let us know.

    • Anonymous March 9, 2015 at 5:16 pm - Reply

      I’m in Arkansas as well. Did u find anyone to help you?

      • Mary March 18, 2015 at 10:09 am - Reply

        Thanks Ruth! That’s an interesting combination, not one I’ve ever heard of & I thought I’d just about heard them all by now. Lyrica made me feel really crappy. I’ve been on Gabapentin for years. I may have to give Lyrica a try again. Thanks again!

  17. L B December 10, 2013 at 9:31 pm - Reply

    Does anyone know of any pelvic pain therapist or Dr that deals with PN in the state of AR. have a 18 years old son who has had to one home from college and quit his dream of baseball .

  18. Ben December 28, 2013 at 12:29 am - Reply

    I am a male, and have been dealing with this for 6.5 years, with the triggering evert being an infection in the prostate area because of an enlarged prostate. The ache has been a serious quality of life issue. My local urologist found Dr’s Hibner’s and Castellanos in Phoenix, AZ a year ago. I set the appointment with Castellanos for the office consult (4 month lead time … It was a longer lead time for Hibner), which included an MRI and seeing his Physical Therapist. A nerve block and Botox injection was scheduled and happened in late May (another 2 month lead time). That provided the first partial relief (I have been and am still on Norco 10-325 and 300 mg gabapentin) … Dropping the ache from a 6-8 down to a 2-4. However it took around 30 phone calls to get the next one scheduled, which happened in late September (should have been 6 weeks). I found Dr Castellanos to be quite good. However their team appears to be swamped with more patients than they seem to have time for.
    In the meantime my local pain specialist (in Utah) was willing to research the procedure. He did my 3rd nerve block 6 weeks after my 2nd in AZ, (which was as effective as the one in AZ) and have the 4th sked for this coming Monday.
    What I want to get to, which is important, is that I received a letter from Dr’s Hibner and Castellanos, stating they can to longer see me as a patient. Remember they are OB/GYN’s….. “This change is because of practice limitations that have been placed on Physicians who are Board Certified through the American Board of Obstetrics and Gynecology (ABOG). ABOG recently developed an expanded version of the definition of an Obstetrician – Gynecologist, which limits the practice of Board Certified OB/GYN’s to the medical and surgical care of female patients only.”
    Seems like this ruling is stepping away from the Hippocratic Oath doctors are supposed to take. These people have been doing research to help others and have been effective at it …. And applying what they learned on women with this problem and successfully applied this procedure on men …..and guys have been flying there from all over to get their help.
    I am glad I found an MD locally who is willing to do this nerve block for me. He had done his residency at the Mayo Clinic in AZ.

    • Ben December 28, 2013 at 12:34 am - Reply

      I wanted to add that both my local Urologist and local Pain Specialist M.D.’s are excellent doctors who care.

    • Sunil December 28, 2013 at 1:43 am - Reply

      I have had PN and related issues for nearly 40 years and I too had prostate discharges as well as urgency (urinary and bowl), ED, groin pain, etc. Now into my 4th year of treatments, have been seeing Peter Dornan (Brisbane), Paul Fien (Brisbane) pelvic specialist, Bob Margetts (Byron Bay) taping expert and much more, Dr Paul Ohmsen (Gold Cost). I live in Australia.

      I have had no operations, I avoided them and have started to see great progress. The issues with the prostate were caused by referred pain and issues with the nerve (not just pudendal nerve), exercise, losing weight, pool work. Soon I will start on treatments for the pelvic floor that Jo Milios (Perth) will provide, to address ED issues. Over all I am feeling much better but have a way to go, as I need ongoing treatments for a while and may need them for a life time as maintenance.

      I still have my bad days but the good are increasing slowly but surely. I did not rely on the one person to treat me but took the bull by the horns and found people who specialise in various areas. I have a hip, SIJ/PN, groin and ED issues/injuries all need to be treated and as a team of the above people I am using, I am getting better.

      Taping is a great way to reduce pain and support various muscles for rehabilitation, it is not a cure but a means of helping healing. I could write a lot more and I written a lot in Pudendal Hope support group. Due to racist comments by someone and ensuing arguments I was banned. I hate racism. Shame all of you could have benefitted from my experiences with PN, ED, Pain management and a lot more. But that is life.

      I have various treatments now that are all helping. No one person can provide the complete treatment for this injury, the injury is not just the one to the pudendal nerve but a number of injuries. As I have discovered, once the SIJ is injured then other injuries result.

      I have not had any prostate issues now for 4 years, initially I was diagnosed as having non-specific prostatic issues (in other words a fancy way of saying we do not know what is happening). Pudendal nerve runs quite close to the prostate gland and when you have PN, you can get prostate fluid discharges and other issues. As I am discovering as the pudendal nerve starts to recover so the symptoms diminish and I hope will eventually go away.

      Some of the issues men and women have is due to stressed pelvic floor, men are affected in terms of ED. With the correct treatments, such as pelvic alignment and rehabilitation, SIJ treatment (Peter Dornan – see his paper in the BJUI), treatment of the hip and alignment, pelvic floor treatment to relieve stress, most of the issues will be addressed. Those that are not need to be looked into and treatments sought. Unless absolutely required avoid operations and before you start any pelvic treatments have a clear x-ray of the pelvis to ensure that there are no tumours, or other issues that are causing problems. Many “professionals” in the medical “industry” do not even think about doing the very basics and confirming their diagnosis as to what other issues can cause similar symptoms, years down the line with no progress being made, some patients find that the issue was something else! Only winners are medical “professionals” they still get their money and we as patients have wasted both time and money.

      What a shame that I can not provide more information on Pudendal Hope, but that is okay. I think I was the leading contributor for men.

      • jess davies July 25, 2014 at 4:10 am - Reply

        Hey i just saw your in Auz, a male fam member has PNE in NZ and weve been unable to loacate anyone even in auz that does surgery or specilised treatment, who would you recommend to get in contact with? my emails jess.rdavies@hotmail.co.nz thanks!

      • Sunil August 17, 2014 at 8:41 pm - Reply

        I have been getting treatment for my condition from a Japanese specialist on the Gold Coast, he uses a Japanese treatment. I am nearly pain free and able to walk freely now, I am progressing very quickly in the last 6 months and can see light at the end of the tunnel :).

        I am getting inexpensive, simple and very effective treatment and it feels good. I feel like a new chapter in my life is opening. The world seems different when you have no pain or very little, the colours are so vivid, sounds so pleasant and life is easier, I can hear people talk rather then try and hear them, while fighting the pain, urgency issues, etc.

        • Nancy August 18, 2014 at 9:42 pm - Reply

          Please send contact information for the person you’re seeing. Thanks.

          • Peggy August 19, 2014 at 7:54 am

            What actually does this Japanese specialist do? Anything like acupuncture?

      • Sunil August 22, 2014 at 9:01 pm - Reply

        My Japanese specialist does not do acupuncture, in fact he assessed what was wrong with me and is treating the SIJ and the whole body. My two friends who have similar issue with their SIJ are also moving forward and seeing results. For me 6 months down the line, I am walking with less or not pain, no urgency, no digestive issues, next to no groin pain, etc. I am living and enjoying my life after 40 years of hell and abuse by the medical doctors, who only know how to make money. That is my experience.

        Masaki does not work full time now days but if anyone lives or can get to the Gold Coast, I think they should see him. He assesses what needs to be done and works on the injury systematically, one step at a time. I know I felt better after the first treatment and the effects of the treatment lasted a whole week, now they are lasting and I am getting better. I have hope and a life to lead, looking forward to the future, instead of wanting to die. He was telling me that he uses Japanese techniques that are traditionally used in Japan. I also do yoga, core stretch classes with teachers who know what they are doing, I do light weight training, I walk a lot, walk and claim up a mountain, so I am very active that has been something that has helped me. I have worked on my glutes and also do Sumo squats with bell weights (https://www.youtube.com/watch?v=9ZuXKqRbT9k) and I also use a rubber band like a big one for my glutes similar to http://www.oxygenmag.com/slideshow/great-glutes-and-legs-workout/7/ but not the same as. Maybe I will write a book on my recovery and what I did.

        Get the core working (core is not just the abs but is from the neck down to the knees), get fit but not rush into it. Doing walks, stretches, yoga with a good teacher and working with someone like Masaki, Bob Margets and putting aside time for yourself, changing the bad self talk, I have improved and on my way to being cures. This is not such a difficult issues to resolve, just need to be dedicated to working on it, seeing specialists who move you forward and not just drain you of money. I took charge of my injury and got to understand what was going on with my body and listened to my body, tried things, it has taken time but is worthwhile.

        He works at the Healers Touch 07 5570 6789 at Pacific Fair.

      • Sunil August 26, 2014 at 1:04 am - Reply

        Feeling happier as I have next to no pain and it is lasting too, has taken 40 years to get there but I am. The issue with Pudendal neuralgia is that many medical professional concentrate on the one issue and forget other issues that directly or indirectly affect the patient. Having talked to one of my other specialists and understanding how the brain copes with persistent pain, resulting in anxiety, depression and how other muscle groups are affected, from personal experience I can say this one injury if left untreated affects so much more.

        We can not just say that the issue is purely PN or even PNE, even after treatment other issues are left untreated and brushed under the carpet. For me on going hip, leg, buttock, pelvic floor pain, urgency, having pins and needles, neck pain, shoulder pain etc. were not addressed. A narrow focus on the pudendal nerve is not doing anyone any favours. I am glad that Masaki has seen the bigger picture and is treating the whole core and I am doing exercises to help support the core.

        I have heard and read advice about being careful of yoga, pilates, weights, walking even for me doing a bit of rock climbing, my life was on hold. So I decided to walk, get fit and get into yoga, as well as get the best treatment possible and I have moved on a lot. Still have issues but not as bad as before.

      • aussiem October 15, 2014 at 3:10 am - Reply

        Yeah sorry to hear you left pudendal hope , i thought you had got better , and yes you were a voice for men ,
        Sunil can you contact me , and give me some info about therapists on the Gold Coast ,as my pelvic issues had come back , i thought i was on my way to recovery , but it came back to bight me .
        thanks Aussie-m

      • Jay November 19, 2014 at 11:11 pm - Reply

        Hi Sunil

        I suffered with PN for 8 months. Finally put my finger on it after numerous doctor and specialist visits. So frustrating! Started seeing Peter Dornan two weeks ago and he is brilliant. My problem is all because of SIJ. Right side tilted. Pain on right. Would love to hear some feedback from you in how you were when you started treatment, how you deal day to day and how long before you got some results.

    • susan eixenberger November 17, 2014 at 12:42 pm - Reply

      Ben,
      I am in Utah. Who is your pain specialist? I would love to talk to them.

      Thanks,
      Sue

  19. Analyst1946 January 3, 2014 at 7:09 am - Reply

    As a surgeon MD with cycling induced perineal neuropathy (most likely compression and or irritation at level of Alcocks canal) I do agree that surgery is not the answer for most patients.Some suggestions re physical therapy are quite reasonable and might help,however in Medicine to prove that a certain therapy is really effective one must conduct prospective randomized trials and that has not been done.In fact this field is littered by a spectrum of well meaning but uneducated semi professionals to academics who have as yet failed to prove the validity of what they are doing and money making crooks in a variety of private clinics.My advice be careful especially if anybody suggests anything of an invasive nature and only go to surgeons who practice in an institution where stringent peer review is practiced and even then check them out carefully.I work for 34 years in a renowned academic Hospital and have seen my share of nonsense even in my own place.
    Now this has not been helpful,but I do have a few suggestions which you can try and there is no downside or danger,although I am the first to admit that it has not been studied appropriately.But let me tell you what helped me after careful study.
    Vit D3 5000 U/day has a very significant anti inflammatory effect which is not well known but the science is there (JCI,2013).I am somewhat an expert using this drug.Next Vit B12 ( 5000 U/day) helps with nerve regeneration ( also good science available),apply Voltaren Creme to the perineal area two to three times a day.I even smear it on my bike Chamois and finally take long-acting Tramadol( careful read everything about Tramadol dependence before).This does not mean you should forget about physical therapy which can be very helpful,but not everybody has a good therapist available and finally make sure your diagnosis is correct.Good luck.

    • Mary Strong-Spaid January 6, 2014 at 12:11 pm - Reply

      Doctors don’t seem to know much about this. It is painful. Makes sitting for any period of time…..impossible.

    • Donna January 28, 2014 at 1:38 pm - Reply

      Hello Surgeon,MD, I am 65 yr old female who has had PNE for the past 18 months. Had a hysterectomy and bladder sling in May 2013. Had burning and sensitivity for the past 3 yrs. but did not know what it was. Two urology doctors said I needed bladder sling and that would cure my symptoms. It did not, probably made it worse. Had several trigger point injections that did not work. Taken about 3 different nerve meds, they did not work. Wanted to have the Neuography MRI which my doctor gave me a script for but found out it’s not covered by my BC/BS and it costs $4,000. Even if I get the MRI then what if they say it’s truly PNE and they see where it is on the MRI. Do they then try a block??? don’t know that answer yet. Have an app’t with another urologist at Jerfferson Hosp. in Philly next week. Don’t know if that’s a waste of time and money or not. Thought maybe they would have some up to date treatment or something to help me.
      I saw that you take D3 5000 per day and B12 same dose. Seems like such a high amount and would there be any side effects from that much? I am taking 2000 D3 now and half the B12. If you have time I’d love your thoughts. Thanks ever so much,
      Donna G. Bucks County, Pa.

  20. Rise Schneider January 30, 2014 at 10:16 pm - Reply

    Please help! My Mom has been struggling with this horrible pain for several years now. 2 years ago she had surgery to relieve PNE in NH. We loved the Dr. and were very hopeful. She still has a great deal of pain after the surgery and many different treatments (nerve blocks, electrical stimulation and meds). Of course, she uses meds, gets dependent and they stop helping and then the local pain Drs treat her like an addict. All she wants and all we want for her is pain relief! She is willing to try anything. She lives in Michigan and is otherwise a very healthy 71 year old woman who would love to have her life back. She gave me permission to search for help for her. I will take her anywhere. Any ideas or help would be greatly appreciated -REALLY!!

    Rise Schneider
    rkbs@earthlink.net
    If you contact me via email, I am happy to provide a phone number or anything
    THANK YOU!!!

    • Sunil January 31, 2014 at 6:24 pm - Reply

      Surgery can be affective but at a cost, I noticed people on Pudendal Hope that many people who have surgery they improve. But between 18 months to 2 years I noticed they came back reporting same or worst symptoms. It appears that scar tissue forms and compresses the nerve.

      For my experience I feel that good assessment by a Physical Therapist like Jerry Hersh or a list from http://www.pudendalhope.info/node/63 you may find someone who can assess her.

      I would ask the surgeon to reexamine her but also get 2nd opinions from a reputable PT in the field. Maybe even get an MRI of the Pudendal nerve to see if it is trapped.

      From personal experience I have also noticed that PN(E) is never just the one issues but a group/number of issues. A holistic assessment of the spine from neck to the SIJ is worthwhile doing.

      In my case I has PN the SIJ had rotated out, but I also had an unstable hip and pelvis, very tight muscles, Illiac Crest issues, urgency.

      I have been on a big journey after 40 years of pain I am finally turning the corner with 4 years of conservative treatment. That has involved PT, I see 5 different people who specialise in their areas of interest and together have helped finally turn me around. From the days when I would pass out with pain and was sick most of the time to a person who can climb mountains, walk, run (limited at the moment) light weight train and am leading a more active life.

      One thing that helped me was that I kept active no matter how much pain I had. I wish I had time to write more, but maybe I will one day. But I have seen some of the best sports medicine doctors and PT’s in the world who have helped me.

      You can have a lot of success and even be cured in many cases depending on how you are treated and what the injuries are. In any case I know that people can have a better life with less pain.

      I have had taping techniques used on me and they helped reduce pain, support muscle function and helped maintain me. Through to exercise routines, resting and accepting. I am getting there.

      Regards, Sunil

      • aircraftguru January 31, 2014 at 8:04 pm - Reply

        I have been dealing with chronic pelvic pain / prostatitis for almost 7 years. I have been to a large matrix of doctors and tried everything which made sense. I had a pudendal nerve block last May and 3 others since. They provided only partial relief and lasted only about 3 weeks. What I am about to do next is to do a Laparoscopic Prostatectomy. There is an MD near Miami (Arnon Krongrad) who was the 1st to use the laparoscopic procedure for prostate cancer cases in the U.S. And began a formal clinical trial in 2008, I think. One of his former patients is an Oncologist near Seattle …. Who had this same pain/ache as I have …. For 13 years. He went to Dr Krongrad for this surgery. It worked and he no longer has this pain. He made a nearly 40 minute video clip on what he went through and his wife, a registered nurse, talks near the end of the video. I searched and found this Oncologist’s office phone number and left a message as to why I called and would he call me. He called this morning. It was a great call. I have seen other videos about this surgery as well by other patients of his. My impression is that Dr Krongrad is a perfectionist and looks “out-of-the-box” for solutions to problems.

        Ben

        Sent from my iPod, so any fanciful or misspellings are its creative auto-correction … 😉

        >

      • Dee Byrne May 3, 2016 at 9:49 am - Reply

        Thank you Sunil for your posts. They inspire me with hope. I have had PN for 2 years.Deirdre

    • Jean February 28, 2014 at 5:55 pm - Reply

      I am in Nh, could I get the name of the doctor your mom went to ? I am only 3 weeks into this burning, nagging pain in my butt ! Can’t stand it !

  21. Ladyfayej February 12, 2014 at 2:03 pm - Reply

    Has anyone found a good cushion for using when driving when you have this condition?

    • Mary March 10, 2014 at 3:53 pm - Reply

      Pillows have been the only thing that helps me.

      • Cm March 11, 2014 at 11:20 pm - Reply

        EHOB Waffle Cushion

    • Anonymous September 15, 2014 at 2:56 am - Reply

      The life saving(!) cushion I have been using is actually a cushion headrest that u would use on an airplane! I drive, go into restaurants & basically every other event that requires sitting. The best ones for me (and I order 8 at a time and have them shipped directly) are by XpresSpa. They usually last me about 2-3 months. Without these, I would have been home bound and prob would hv killed myself since 4 years ago I was an active, healthy 42 yr old female. I cannot believe how helpful these have been in order to live a somewhat normal life!!!!

  22. Peggy February 19, 2014 at 10:51 am - Reply

    Has anyone developed peripheral neuropathy from on symptoms. Has anyone tried Cymbalta?

  23. Peggy February 19, 2014 at 10:53 am - Reply

    Has anyone developed peripheral neuropathy from pudendal symptoms. Has anyone tried Cymbalta?

    • Sunil February 28, 2014 at 6:49 pm - Reply

      I have and I was in a land of oblivion and totally zonked out.

      I have now managed to get greater control of my life after 40 years of hell, pain and injury having found the right person to work with me. I am getting a holistic approach to the problem. The SIJ issue is being treated as a whole, meaning the entire core and the exercises I do have helped. I have less pain, next to no urgency and my life is a lot better.

      • Saurabh April 30, 2014 at 8:26 am - Reply

        After 1.5 years of misdiagnosis, I visited a new doctor who correctly diagnosed it. He prescribed me Nuroz Forte, which is a form of Vitamin B12, it relieves pain. I will visit him again on advice for physiotherapy.

    • Mary March 10, 2014 at 3:49 pm - Reply

      Hi Renee! Don’t feel alone! There are more of us out there that have this too! One of the things I did to try & keep my job longer was to sit on ice. I also found a local doctor to prescribe me narcotics (which has helped more then anything I’ve had done.) An I’ve had both the full nerve blocks, a more detailed nerve block, & decompression surgery. If u would like support to just be able to talk about things feel free to email me at marylharley@yahoo.com.

    • Mary March 10, 2014 at 3:51 pm - Reply

      I had been on cymbalta for awhile. I didn’t really get anything from that except emotionally feeling better (which is a BIG DEAL)!

  24. Renee March 7, 2014 at 1:38 pm - Reply

    I believe I have had this disorder for about 3 years & it has been misdiagnosed. I have been to a physical therapist with minimal relief. I have also had 2 injections. The first injection lasted about 5 days. I just had the second injection the other day. I live by St. Louis, Missouri & I can NOT find a doctor who specializes in this disorder. I can not do my job as it requires me to sit all day. The only relief I get is to lay down. Does anyone know of a doctor in my area that specializes in this disorder? Thank you!

    Renee

    • Pelvic Guru March 7, 2014 at 11:28 pm - Reply

      Dr. Chip Butrick would be a good start. I’m sorry you are dealing with this. Don’t give up! It just may take some misses before you find the right help. And…even with physical therapy – there may be a way to do it again once you have a good medical approach (and possibly a different therapist who understands PN). I’ll see if I know of any PN specifically trained PTs in the area.

    • Mary March 10, 2014 at 3:48 pm - Reply

      Hi Renee! Don’t feel alone! There are more of us out there that have this too! One of the things I did to try & keep my job longer was to sit on ice. I also found a local doctor to prescribe me narcotics (which has helped more then anything I’ve had done.) An I’ve had both the full nerve blocks, a more detailed nerve block, & decompression surgery. If u would like support to just be able to talk about things feel free to email me at marylharley@yahoo.com.

    • susan May 29, 2014 at 8:27 am - Reply

      I live in St Louis Mo. I am having a hard time even finding anyone that gives a test for this anyone?

      • Anonymous May 5, 2015 at 6:30 pm - Reply

        Visit Legacy Physical Therapy in St. Louis.

        • Mary May 6, 2015 at 9:18 pm - Reply

          Hi All!~
          If you’re looking for a doctor I suggest going to PudendalHope.info. There’s a list of both doctors & PT located on that site.
          I’m also willing to provide one on one support to anyone who needs to talk. I’m just another person with PNE, but I try to provide the best support I can. No one in our normal everyday lives can totally relate & I find it helps to talk to another sufferer greatly!!

  25. Mary March 10, 2014 at 3:40 pm - Reply

    Hi! I’ve had PNE since 2004. I’ve had the nerve blocks & the decompression surgery. I would happily provide support to others in the matter. You can email me at marylharley@yahoo.com. I know when I was able to find a person who I correspond with and can bounce ideas off of I found it very helpful. Please feel free to contact me if you have PNE.

  26. Cat May 22, 2014 at 9:01 pm - Reply

    Anyone know a doctor in Ct that can help women with this condition?

    • Meg January 16, 2015 at 12:35 am - Reply

      If you found the doctor?
      I am from ct

  27. Daniel May 25, 2014 at 11:37 am - Reply

    I have had this for 3 months now. The sore perineum radiating pain upwards. The kicked in my genitals feeling. All I have is the VA health care system. They gave e some stretches that help temporally. Still waiting for my second PT appointment, “we can get you in in 6 weeks” the waiting is forever. I was a hard core cyclist for over 30 years, I have over 100,000 miles on a seat. I was bulletproof until now. It just won’t go away. My life is in a very dark spot right now. Will this ever just magically go away? I can’t even read one success story on the web. There is no one to even discuss this with for nobody has even heard of anyone who has had this.

    • Pelvic Guru May 25, 2014 at 1:40 pm - Reply

      Daniel – each case is so different. The internet is a scary place and the pudendal stories read like doom and gloom. I really do believe there is hope for you. In the meantime do the following: 1. Stop cycling or any other activities that exacerbate the issue (it’s like picking open a wound as it is trying to heal) 2. Make sure you are going to a PT who specializes in pelvic pain, pudendal issues and male anatomy. Not all are trained in this. Where are you located? 3. You may also benefit from medicines for inflammation or muscle tightness (you can consult with a good MD before your physical therapy).

      • Daniel May 26, 2014 at 12:25 pm - Reply

        Thank you for such an immediate reply. Of course I have stopped cycling I can hardly sit in a chair. When I do I sit on a rubber donut. I am in Bellevue Washington. I have a pharmacy of muscle relaxer pills that I don’t take, they make me into a zombie, I still feel the pain I just don’t care. Why is there no web site where people talk about this and tell how it went away? I still get the feeling that it never goes away for anybody because I have not read that anywhere on the web.

      • Esme Janse van Rensburg June 11, 2014 at 7:10 am - Reply

        Hi. My name is Esme, I live in South Africa and I found this site by chance – after googling all over the place. I have had these very painful and embarrasing (ever seen a chair in church becoming transformed into a bed 10 min into service?) for the past 2 years after I had my coccix removed. Directly after the surgery I could not urinate for 2 full days and even inserting a catheter did not relieve me of my precarious situation. I had so much pain I lost 18kg in 3 days. After 3 months of not being able to sit or stand much for that matter, enduring the most excrusiating pain, I went back to my surgeon and he sent me to a gyneacologist. Thus my journey began, from one doctor to the next, living in the country and travelling up to 600km to consult a specialist. I even joined a Pilates group and no matter how painful I found the experience, I kept on going because by then I imagined that the pain is all in my head. I would take handfulls of drugs to keep the pain at bay and myself going. After hearing for the upteenth time that my story is very sad, I should go for another MRI but frankly, being one of the leading neorologists in the country, he doesn’t know what is wrong with me, I started to investigate the symptoms and found that all this time it appeared I had PNE. After losing my job because I can only sit for 10 min at a time, I had to get my insurance papers completed by my surgeon. I mentioned the PNE to him and he said it may be possible that I have PNE and he did a paper on the subject once but was not really clued up and he doesn’t know any doctor for referral. He did try to get me an appointment at a “Pain Doctor” for a nerve block, but the specialist admitted that although he has never dealt with a patient with PNE, he is willing to take a chance on me if I am willing to give him a chance. I have even contacted the surgeon’s association trying to get a doctor who knows about PNE but to date I have had no success. Is there any way that you might know of a doctor who can help me?

      • Nancy August 17, 2014 at 6:23 pm - Reply

        Pelvic Guru, My husband has dealt with very severe pain for 5 years. He has not worked in almost 4 years and in bed nearly 24 hours a day. He can stand an hour or so through church or a meal out, but absolutely no sitting of any kind. We live between homes in Fargo, ND and Watertown, SD. If you know of a specific PT in our area, please let me know. Are you a medical person? We have not heard of Dr. Butrick before, and he would be relatively close to us. What is his specialty? Does he work specifically with PNE? We are desparate. The quality of life for my husband is dismal. I love him so much, and we need help. Anything you can suggest. He is currently on Lyrica and Oxycodone. We’ve tried gabapentin, amitryptylene, baclafin, fentanyl patches, steroid injections, deep tissue massage, trigger point release, PT (but not someone who was very knowledgeable.

        • Blair Davey August 19, 2014 at 2:25 pm - Reply

          Hi Nancy:

          We moved to Missouri from California back in November 2012. I had a wonderful team of medical providers back in Cali and tried to put together a team here in Missouri/Kansas. I”d known of Dr. Buttrick for many years. He is one of the founding physicians of the International Pelvic Pain Society. He had been in practice for a number of years and is very experienced and knowledgeable.

          I was lucky enough to be a patient of Dr. James Carter when he was still alive – he is another of the founders. I also was a patient of Dr. Arnold Kresch’s during his lifetime – he was not a founder but one of the earlier members.

          I saw Dr. Buttrick late last year and my appointment was not that great. I would be happy to correspond with you directly about Dr. Buttrick, if you wish.

          I wish you and your husband all the best. Again, please do not hesitate to contact me directly if I you feel I might be of any help. FYI, I’ve had chronic pelvic pain for over 27 years and have had 11+ procedures.

          Blair Davey
          Lexington, Missouri
          blair@goldenlifeyoga.com

    • Anonymous May 27, 2014 at 10:46 am - Reply

      Daniel please feel free to email me. I’ve had the injections & the surgery. I’ll happily provide support an advice. My email is marylharley@yahoo.com. I hope to hear from u.

  28. Daniel May 29, 2014 at 9:39 am - Reply

    This place seems to be a ghost town. My email updates does not work for this site and I guess theirs does not either. This is telling me how rare this Pudendal Nuralgia is. I finally did go to a PT session at the VA hospital yesterday, it was the finger up the butt kind of therapy. Too early to tell right now if it did anything good. It took a month to get that appointment. I guess this is just another depressing post that someone else will read. Where are all the “I have recovered” kind of posts for this ?.

  29. Lorien June 30, 2014 at 12:46 pm - Reply

    My name is Lorien, I have been in pain for 4years. For the first two years my family doctor told me it was all in my head and refused to do a MRI, scan, x-ray anything to get to the root of the problem. I begged him crying with this pain to help me which he refused. But he had no problem referring me to psyche ward. The one good thing is he sent me to was Wasser Pain Clinic, which took 27months to get there. Once there, a fellow Dr. mustaneer completed several tests for approx. 2hrs and gave me the diagnosis of Pudendal Neuralgia, Sacroiliac Joint Dysfunction, which Dr. Gordon (head of pain mngmt. clinic) agreed. We met several times starting with pain medication that was slowly increased to 30mgx3 oxyneo, Percocet and diazepam suppositories. This helped relieve the pain approx. 20%,. Next step was pain blocker in sacroiliac joint 2x which did not help, after 6months of every fellow going over file, picking and prodding my husband demanded that the pudendal nerve receive block-steroid and freezing 1st time 10% help, 2nd injection, very little freezing in fact called doctor to recovery and told him no change, for the next 9 days, screaming in pain. I now will not receive any more blocks. Dr. McDermott Urogynecologist gave nerve blocks into vagina which helped 30% for approx. 7-10days. I have really declined in the past year and am in such pain, it feels like a burning broom handle being shoved into you while a throbbing and constant burning all the time especially during voiding and bowel movements. I am basically house bound as if I stand longer than 20min, sit or walk 1/2 block, no amount of medication is helping me now. I am meeting with Dr. Gordon this week to see how I go about getting surgery in USA or France as Canada does not have any doctors.
    Any suggestions as to what doctors or how to go about it.???????

  30. Lorien June 30, 2014 at 12:59 pm - Reply

    Lorien, just to let you know I’ve done meds, physiotherapy internally, acupuncture, massage, pain blockers.

    ESME- Dr. Roberts in France, Dr. Kenneth Renney Houston Texas, USA, Dr. Hibner, Phoenix Arizona are just some of the doctors I’ve found.

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  32. Willgetthere July 3, 2014 at 7:05 pm - Reply

    My bf has this problem for over 15 months now, he had tried taping, endless PA, stacks of cushions, physiotherapy, acupuncture, massage, pain blockers… We on our way back from Mayo clinic, just got his first Pudendal Nuralgia shot. We rented a mini van so he can lay down on this trip to Rochester from Kansas. The doctor told him it’ll take up to 6-7 days before any effect kicks in.

    The best thing so far is a vibrating mat/massage mat that he can lay down on. The subtle vibration is very smoothing.

    • Nancy August 17, 2014 at 6:29 pm - Reply

      Who did you see at Mayo Clinic? We are wondering which specialty to go to there. We want to try one more place.

    • Nancy August 17, 2014 at 6:31 pm - Reply

      Would also like information about the vibrating mat / massage mat. Where did you purchase?

    • Nancy September 2, 2014 at 6:22 am - Reply

      I don’t know if you saw my questions. My husband has had PNE issues for 5 years. We’re desperate. Who did you see at the Mayo Clinic, and where did you purchase the vibrating mat? Thanks so much for your help.

  33. Pelvic Guru July 3, 2014 at 7:14 pm - Reply

    Hello to all! I’m sorry I have not moderated this post as well as I should have. Thanks very much for all of the comments. I am going to take a closer look at all of the comments and see how I can help. I’m connected to some wonderful healthcare professionals around the world. I plan to post many more articles on pudendal neuralgia and pelvic pain in the coming year, as we desperately need more GOOD info out there. This was just the start of information that is missing… Thanks for tuning in. Wishing you all the best!!
    Tracy

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  36. Mark August 25, 2014 at 4:15 pm - Reply

    Maria, there is a doctor out of Beaumont Hospital in royal oak, mi that specializes in pudendal nerve issues. Dr. Kenneth Peters, chief urologist. Beaumont has physical therapists and pain management doctors to diagnose and to map out a treatment plan. I am currently undergoing Pudendal Nerve Treatment and it has been a slow process, but certainly helping me to cope with the pudendal nerve issue.

  37. Carrie Pasfield September 3, 2014 at 11:54 am - Reply

    After much research on the web I found a team of doctors that work out of William Beaumont Hospital in Royal Oak Michigan. Doctor Kenneth Peters is the primary doctor but has others who work along side of him. I have had so many tests done and nothing found. My regular doctor put me on Lyrica and all it did was make me feel out of it and drunk. I went to this team of doctor’s last Thursday and I am already out of pain. I still have to go for therapy once or twice a week but for the time being they prescribed Diazepam to be inserted into the vagina. It relaxes the muscles that are pressing on the pudendal nerve. They deal directly with the Pudendal nerve and the only one’s in Michigan who do. Most doctor’s don’t know how to deal with it. They will also do botox but as a last resort will do the surgery. They assured me I would be out of pain with their program. I am already out of pain just from using the Diazepam. I hope this might help someone who is in this horrible pain. Perhaps ask your regular doctor if he can prescribe Diazepam and see if it works for you. Good luck!!!

    • julia November 1, 2014 at 5:07 pm - Reply

      Hi there,
      I have been suffering with this P nerve pain for 3 years now. I was wondering if you could give me the info for who to contact at the Beaumont hospital, which department or doctor?
      Thank you 🙂

      • Carrie Pasfield November 1, 2014 at 5:51 pm - Reply

        His name is Kenneth Peters and is in the women’s urology center.

    • Julia January 19, 2016 at 5:25 am - Reply

      Hi,

      I hope you don’t mind me contacting you and hopefully you are still active on this site.

      I have been suffering from this for six weeks straight and already have had enough, it’s just unrelenting.
      With the diazepam, is that just the oral medication that instead is used as a vaginal pessary?
      Have you had any issues from using it?
      Thanks for any info.

  38. Virginia Iverson September 7, 2014 at 12:04 am - Reply

    I have been in pain now for every moment of the past three months……it began shortly after I had purchased a new Tempurpedic bed! I sat up one morning and felt the sensation of having an object in my anus..a few days later when lying on the bed I woke up with excruciating pain in coccyx area and my entire butt was pins and needles…. .it has continued, but has become more painful, sometimes feeling like menstrual cramps, sometimes pain radiates in sacral area or to right SI joint….makes me somewhat nauseous at times. I have had an xray, an MRI and a full body scan….and am waiting (2 months) for an appointment with an orthopedic MD (this was the referral given to me by my primary MD). I don’t have a diagnosis yet, but the research I have done makes me think it is a nerve compression or entrapment injury. Does anyone have a recommendation of a physician or PT who might help me ? I am in the southern California area…about an hour from LA. I have heard good things about Dr. Hibner in Phoenix…..but would hope to find someone closer. Please…I need help.

    • Carrie Pasfield September 7, 2014 at 8:10 am - Reply

      Virginia, there are a list of doctors in southern california and here is the website. Good luck. http://www.coccyx.org/treatmen/docsusa.htm#California

    • Pelvic Guru September 7, 2014 at 8:19 am - Reply

      There’s definitely help for you. The good news is that it would be impossible to have nerve entrapment just from a switch in beds. It is likely a muscular (levator ani and/or obturator internus/ coccygeus) spasm reaction to a change in biomechanics at the sacrum due to the new bed. But, a full history and evaluation will definitely help. I know several fantastic people in LA. Stephanie Prendergast at Pelvic Health Rejab Center specializes in this. Deena goodman and Jennie Gablesberg are great too. (They are all too-notch pelvic PTs). I know Dr. Hibner quite well. He and his team are excellent. But, you can definitely start local and you should get relief! I hope you have changed mattresses/beds? Are you near PV? Kathryn who owns Praxis just took my Pudendal Neuralgia course. She’s great too. Lots of options!! ~ Tracy Sher http://www.sherpelvic.com

      • Virginia Iverson September 12, 2014 at 10:45 pm - Reply

        Thank you for the info….and for your impression that my problem may be a muscular spasm instead of nerve entrapment. I don’t wish to diagnosis myself…..but one does a lot of wondering and analyzing of symptoms while waiting for a medical appt. I have been in touch with Angela Spruill at Custom PT in Thousand Oaks, CA…and am hopeful that the orthopod may refer me to them if PT is indicated. I recently stopped chiropractic treatments…….after 20 treatments that were not helping…..and I actually think I have somewhat less pain since doing so…..and the odd pelvic and anal sensations have diminished. I still cannot lie on my back, however, even with a wedge or pillow under my knees. I had a full body scan a couple of weeks ago (I was dx with breast cancer in 2012, so onc wanted this test to rule out bone mets…..thankfully, I remain cancer free). The hour long scan was uncomfortable, but the day after was misery…with relentless aching pain in my coccyx, sacral area and buttocks.. I take naproxen for the pain which helps quite a bit…….have stopped exercising (elliptical and stretching) except for walking, which I do with my dogs for 1 – 2 hours a day…as I am most comfortable when walking. I need to find out which exercises will be of benefit, and which may be contraindicated. My MD appt is in 2 weeks, so I intend to just be gentle with myself until then.I’m not clear on your reference to “PV.” I live in Ventura.
        Thank you again for your info and advice……it is so appreciated!

        • Peggy September 13, 2014 at 8:35 am - Reply

          I too get pain in my coccyx area and a feeling of sandpaper rubbing on the lower back and buttocks. I go to a chiropractor and massage therapist. I did accupuncture for a while, but that did not work. I take gabapentin. My new symptoms the last year is numbness and tingling in my legs. Don’t know if that is related to PN. Neurologist said neuropathy. I also have had a tempurpedic mattress for over 10 years. I may switch to abetter one. Has anyone tried baclofen suppositories?

      • Virginia Iverson September 12, 2014 at 10:58 pm - Reply

        PS
        Yes……I returned the mattress and replaced it with a good quality innerspring mattress……I can currently only sleep on one side or the other. Whatever my diagnosis ends up being, I relate my symptoms to this mattress….it felt I was lying in thick mud ….The only other contributing factor I can think of was a weight loss of 60 pounds over last 18 months…..I wonder if this made my sacrum and coccyx areas somehow more “vulnerable,” biomechanically?

        • Carrie Pasfield September 13, 2014 at 9:12 am - Reply

          Virginia,
          I can relate to what you are saying because mine started after having Cdiff. I swear the two were related but doctor’s can’t confirm it.

    • Anonymous September 12, 2014 at 5:26 pm - Reply

      Hi Virginia,
      USC Physical Therapy has helped me a lot. They have several PT’s who specialize in pelvic floor issues.

      • Virginia Iverson September 12, 2014 at 10:18 pm - Reply

        Thank you for th info!

  39. Jim Weber September 16, 2014 at 8:31 pm - Reply

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  40. Christine September 30, 2014 at 8:41 pm - Reply

    I have pn (undiagnosed) my doctors just ignored my pain. I am now pregnant and dreading giving birth.has anyone given bosh with this disease. I have already expressed my concern with my obgyns and they are not concerned with my pain. They tell me either it might go away or we can treat you after the baby is born. Im scared of more damage to the neerve. Someone please answer my question, I am so lost.

    • Mary September 30, 2014 at 9:59 pm - Reply

      Christine, please email me & I’ll try to get you headed in the right direction of doctors who may help you with your concerns. My email is marylharley@yahoo.com.

  41. Sunil September 30, 2014 at 10:24 pm - Reply

    I am finally getting over PN after 40 years, feels so good. I am happy to found someone who really understand the condition. He has done more in 9 months then all the doctors in 40 years!

    • Anonymous October 13, 2014 at 10:10 pm - Reply

      Good to see things are working for Sunil who else on the gold coast have you been seeing ??

      • Sunil October 14, 2014 at 6:28 am - Reply

        Masaki at Healers Touch at Pacific Fair and have seen Dr Paul Omhsen. Masaki has changed my life I still have issues and flare ups but I am better then before. I am recovering and I hope I will be cured but Masaki will not make such a promise but he has said I have to have treatment for another year and the SIJ is only 1 cm out now. Symptoms have reduced but can flare up if I over do things, sitting is an issue if I sit for too long it causes problems. Before my pain was 11 out of 10 at times, it was driving me made. Now it is 1 out of 10 on good days, 0 out of 10 on great days and can be 9 out of 10 on very bad days. The good days are happening more and more :).

        So this issue was known about in Japan and in India too, before the PN industry started. I say this because I remember when I first had this issue my grandfather used Ayurvedic (Indian medical system) first aid and did not have the strength to manipulate the SIJ. When he told the doctor what the problem was he was dismissed as and old Indian man 🙁 … rather sad. I am getting there.

    • Anonymous October 17, 2014 at 4:36 pm - Reply

      Sounds good that Masaki has changed your life so what does Masaki do ? i know all therapists are different
      How does Dr Paul Omhen treat you ? or does he just Diagnoses you ? and get treatment elsewhere .?

      • Sunil October 19, 2014 at 6:24 pm - Reply

        He treats the body holistically, the SIJ, neck, down to my feet, plus he has given me exercises to do that are really helping, my adductor muscle, hamstrings, hip flexor and other muscles are treated. My muscles were so tight that no matter what manipulation was done on the SIJ, it did not hold. But at last the SIJ is starting to hold and heal.

        Dr Ohmsen does nerve blocks, same as they do in Sydney, he is also a qualified sports medicine doctor and treats professional footballers, so when you sit in the waiting room you will see what football teams he treats. Dr. Ohmsen diagnosed the root cause of the issue, in that the muscles were so tight they were pulling in the SIJ area.

        I do feel better, in fact so good I am in London and I managed to come over too see my father who is very ill. I would never have been able to this in the past, without flare ups, pain, urgency and other issues. With the correct treatment I am healing.

  42. Elizabeth October 1, 2014 at 8:06 pm - Reply

    I am just trying to research again after trying everything else

  43. Anonymous October 10, 2014 at 11:01 am - Reply

    Hi All. My name is Tanya. I am 53 now. I have dealt with pain for over 10 years. I, too, had gone to many, many providers, in search of an answer to my pain. I was a medical transcriptionist for many years. I believe the combination of a C-section, hysterectomy, sitting for my job, etc., all contributed to my pain. I had the bilateral decompression surgery in May of 2012. I am now in the healing phase of the surgery. I know of 3 gals who all told me it took them 3 years after the surgery to feel better, as the nerves are the last thing to heal in our bodies. I am trying to be hopeful in this healing process. I do have to recommend the ONE THING that has played a major role in my healing after surgery. It was recommended to me by another surgery patient. She suggested that I check and see if K-Laser was available in my area and to start doing it as soon as possible, so that is what I did. I found a K-Laser provider an hour away from me, and my husband has been taking me once or twice a month for the last year and a half. It has been of huge benefit to me in my healing and reducing my pain. It will be 3 years in May of 2015 since my surgery, and I am hoping the nerve will be even more healed. Google K-Laser and see what it does. It is a cold laser, painless, and begins to heal tissues and cells deep within. When I had the decompression surgery of the pudendal nerves, they had to make 3-inch incisions in each buttock. The K-Laser has almost healed those incisions. I am awaiting the healing of the nerves now. I have read all of the above posts, and I, too, was suicidal at one point. It is so hard to live in a body full of pain, but I kept on going to try to find my answer. Like you, I have a family to attend to, and not being here was not an option. I actually found a “boating cushion” at Menard’s for $6.00 and cut out a hole in the back. This has been the best cushion for me, even after spending $80 on other cushions. Again, I am not totally healed, but the K-Laser has helped me to avoid pain medication, simply because I’m one of those people who cannot take medications without awful side effects. I wish ALL PN patients had a place to go, but like many of you, we were all misdiagnosed because the medical community is not trained in PN in medical school. What a travesty that is.

    • Anonymous October 11, 2014 at 12:03 pm - Reply

      hi tanya and everyone! I just wanted to tell you that the cushion that has saved me from being homebound and enables me to drive, go to restaurants, theaters, etc is from an airport spa at LAX that i found while going away on a trip. It has enough cushion to raise your pudendal nerve area off the ground and because it was designed for the neck, it didn’t need to be cut-out or changed in any way because it’s shaped like a “U” so your legs and buttocks area fit on it pretty well…it can be ordered online from XpresSpa.com and it’s the black head cushion and it’s in their travel section..Please try this cushion!!! I order 8-9 at a time and they last me about 2-3 months each before they lose their cushion/height from being sat on all the time…I hope this was helpful and I’m def going to look for the K-laser thing too!
      thank you!…

    • Mary October 11, 2014 at 2:12 pm - Reply

      You’re exactly right Tanya! They barely touch on the Pudendal Nerve in Med. School. I found that out from my GP. It’s total crap!! If they could all experience this for a year all of that would change in a hurry!!

  44. Anonymous October 14, 2014 at 1:45 pm - Reply

    Thank you for your replies, Ladies. I am so grateful for the K-Laser. It has helped me and will continue to have it done for as long as I need it. Due to the fact that I have to stand most of my life, they also do the laser on my feet and knees, because those hurt a lot. Research it first to see if it sounds like something you want to try. It is absolutely painless. Where I go is $40 for 3 areas, and insurance does not cover it, but it is worth it to me because it helps with the pain. There are probably You Tube videos explaining it. As far as cushions go, I have ordered so many that I can’t count the money I’ve spent on them. The one from Menard’s doesn’t wear out at all. It is super easy to cut the back out so that my nerves are suspended. I use covers from old cushions that cost me a lot of money to put over these cheaper ones. I have 3 of them, one in the car, and two more in other rooms in the house. I will check out the XpresSpa cushion, too. Thank you for sharing that suggestion. Since I’m not able to work now, I was grateful to have found the boat cushion for $5 to $6 at Menard’s and simply cut out the back. I love these cushions. They are supple but yet don’t collapse. Yes, Mary, when I told my “regular family doc” about what nerve I thought was involved, she totally laughed at me, and said, “That only happens to pregnant women.” I about died. If she only knew it affects men, too. Ugh…never went back to her. I was totally correct on my assumption after being diagnosed and eventually operated on.

  45. Christine November 2, 2014 at 6:32 am - Reply

    There was a list of doctors who were familiar with pne. I cant seem to find it. Someone please post. Thank you.

    • Carrie Pasfield November 2, 2014 at 8:26 am - Reply

      I googled it in my state of Michigan. Doctor Peters was the only doctor who worked specifically with this monster. Perhaps you can try that, Christine.

    • Christine November 2, 2014 at 8:10 pm - Reply

      I am in California. Southern california. If anyone can please help

  46. Anonymous November 20, 2014 at 4:41 pm - Reply

    It sounds like in some cases that the SIJ was part of the problem but i think Sunil said some where that it was tight muscles pulling the SIJ out there a number of muscles and ligaments that stabilize the pelvis how does a PT work out what is tight and what may has lost integrity ?? so so therefor the SIJ is secondary symptom . Which muscle or what ligament is the cause ?? and working out what is tight or what has lost integrity , I have found PT’s don’t do enough tests or know what the right approach is to know if there is tightness or loss of integrity , So how does a PT work out the cause ???

    • Sunil November 20, 2014 at 7:15 pm - Reply

      I find it incredible that “some” medical professionals have very little understanding of anatomy. The issue is that when I had my SIJ injury 40 years ago, no one bothered to check how my hip rotated as well as the SIJ, L5 and S1 were affected not to mention how muscles try to compensate and adapt to stabilise the body. I did not say the SIJ was a secondary symptom or primary.

      What I have said is that the above caused so many issues because I was left untreated and told it was all in my head. Simple because they gave me anti-depressants and the pain went away. So the doctors, thought that it was a depressive disorder! The fact was I had a nerve injury to the Pudendal nerve and anti-depressants suppress nerve pain. They should have realised this very basic fact and investigated.

      I am able to help people and advocate for them, give them insight into their injury so they meet the right people and get the right treatments. I am doing so with a couple of people already and they are getting somewhere, rather then wasting time and money. I have helped a number of people through this maze and have discovered a lot of things myself.

      This problem is no as hard as they make it out to be, if a holistic approach is taken. I am treated from the neck down to my feet. Because when the rotation occurred my body became misaligned, I also had the top of leg impact into the hip, causing groin pain, it was not all due to the pudendal nerve, I had hip flexor issues the muscle was so tight that it causes pain to radiate into the abdomen and into the testicle, on top of the pain I already had due to the pudendal nerve.

      You need people who treat you to be able to think outside the box, or at least refer you onto others, who have knowledge. But this does not happen always and is very rare. I only found two people who did this in 40 years and my life changed. I am hoping that I will make it and be pain free and normal as I can be.

      I am in the UK and have been without treatment for 6 weeks, I could never have flown, managed to be off treatment and I take no more tablets for pain. I can manage the pain and I know how to stop it or reduce it using exercises I learnt and found myself.

      At one stage it was almost impossible for me to drive for 10 minutes, before having to stop due to urinary urgency issues and pain. I can do a lot more, I can drive for more then an hour and control urgency. I take a break every hour just incase, stretch and relax.

      Masaki will be working on me, when I get back to Australia and I am hopeful. If he can do this for me in 7 months and others could not manage it 40 years. It says a lot. Bob Margetts was excellent in how he managed to address a lot of issues for me, I am so grateful to him as well.

      If people want help I am happy to and can write to me. I hope the above gives some clarity.

      • Carrie Pasfield November 20, 2014 at 7:55 pm - Reply

        Very few doctors even know about the pudendal nerve. I have a doctor in Michigan who specializes in this and has helped me a lot.

      • Anonymous November 21, 2014 at 5:09 pm - Reply

        Hey Sunil i know that the SIJ is not the only cause you are right in saying it is a complex of a number of issues as one thing affects the other it becomes a domino effect , with pelvic imbalance you can get a wide range of problems and symptoms , you are right a lot of doctors and PTS don’t understand the complex nature of the pelvis and it’s dynamics , they all say that they are experts they may know some tests they may know most of the anatomy but they do not understand the the complex nature of how everything interacts in the pelvis and the body .Yes i have lost a lot of money to self proclaimed experts , it is sad that they take advantage of us , we end up with the wrong treatment and feel disillusioned , and told there is no hope [ in their eyes] instead of saying this is not my field of expertise , i think they look at us as a cash cow.

        Masaki works all your body , how ? myofasical realease ? and does he do a number of testing ? Also how has Bob Margetts helped ? what does he do ?.

        • Sunil November 22, 2014 at 11:01 am - Reply

          Masaki, uses a number of techniques for what is required. He assess and does what needs to be done. All I can say is I feel a hell of a lot better and a friend of mine has said the same. If I can get to fly on a plan with 7 months of treatment that others could not do anything for me in years. It should say a lot. I have lots so much money and I have been nearly broke and lost my home. Did these experts care? If experts do not know they need to refer.

          • Anonymous November 24, 2014 at 6:42 pm

            Hi Sunil
            It looks like you found a good PT In Masaki , you are very lucky to get good results that work , how did you find someone like Masaki . As there are so many PT’s out there ,all will have ago , but it is luck to find someone who can produce results , and results that hold , how does he deal with the muscle memory ??
            keep up the good road to recovery

      • Anonymous September 1, 2015 at 8:41 pm - Reply

        Hello Sunil
        Thanks for posting so much information. Did you have any other symptoms like heat/burning around perineum? I can probably get to the Gold Coast and stay with friends for a few weeks, so may look at the recommended people you list. Im only 3 months into this pain, but getting bumped from specialist to specliast. The latest was a physio who, after doing internal therapy has made it a lot worse.. prior to that Nortriptoline and a Chinese Acupressure practioner had me pain free – but I couldn’t sit… If you can please let me know id really appreciate it;
        SPACG243@gmail.com

    • Carrie Pasfield November 20, 2014 at 7:41 pm - Reply

      Mine is caused from the tight muscle and I take valium suppositories that help tremendously. If you have a facebook page, go on there and read some of the sad comments about this. It is a support group and it makes you feel you’re not alone in this. The name of the sight on facebook is “Pudendal Nerve Support.” You will hear stories that will blow your mind with this dreadful disease.

      • Sunil November 21, 2014 at 4:12 am - Reply

        This is not a disease but an injury that can be treated if medical professionals think outside the box and actually examine the patient, rather then speculate and blame the patient. They need to understand basics of anatomy, muscle memories, carry out rehabilitation and know what exercises to give.

        I have got the best treatments and options from those who do not practice just western medicine. The person who diagnosed me was an Indian Ayurvedic practitioners, no one in western medicine believed his diagnosis. He was spot on and very honest, he told me I needed to go to a clinic in India but I could not afford it. All up having the treatment from Masaki, the right exercises, rest and knowing someone understands this injury is having a profound change in my life.

        I have very little good to say about western medicine. If people think this is a disease and it is dreadful, just shows me what the “pudendal” industry is like. When I met non-western medicinal people who know what they are doing, life changed. The positive, supportive and caring nature Masaki has not to mention the treatment he gives means half the battle is won. If you want to think its a dreadful disease then so be it. In rare cases operations are required but I have read a lot more and know that should be a rare case. All I will say is thank God, I am not a westerner because it enabled me to look past the narrow approach that was taken.

        I do give feedback to people who treated me but never hear anything back. But have heard through others they are taking notice of what I have said.

  47. Sunil December 7, 2014 at 4:26 pm - Reply

    I have managed to make more progress. I flew to the UK again to see family, first time in 13 years and I had a few issues but nothing like before. I managed to get some Ayurvedic (Indian medical system) treatment to reduce tension of the muscles that was causing issues to the SIJ.

    Masaki examined me and has said that the muscle tone is much improved. The issue now he is working on is the hip, core muscles, SIJ is twisted but back in place. My symptoms are reduced, so I get next to no urgency (urinary and bowl), burning in the penis, testicle pain rarely happens.

    The hip joint is the big issue, it also rotated when the SIJ had an injury, the top of the leg is impacting the hip and I was told this will take a bit of time to resolve maybe by next year I will be okay.

    I take no more pain killers, anti-depressants or need to run to the toilet any more.

    I need to get the hip/leg length issue and the SIJ resolved now and I should be okay. I am hopeful. I feel that the issue with the pudendal never is just one issue and there are a set of issues that are not being addressed that impact the pelvis, hip, leg, etc. No one ever looked at the leg length or did a glide test to ensure that the leg was not impact thing hip. That was the biggest issue with regards to groin pain. I was told every one has one leg smaller then the other. However, the glide test confirmed the issue with the top of the leg impacting the hip, once this was being worked on from the very first manipulation I have improved no end.

    Why don’t medical professional every listen?

    • Anonymous February 8, 2015 at 4:59 pm - Reply

      Hi Sunil i hope things are going good for you are you still improveing ??

  48. ian December 8, 2014 at 10:40 am - Reply

    hey sunsil,

    I believe i have this. This is a very taxing on the mind and i can see it leading to depression. I’ve had this for 4 months and have started to feel very lost in every way. Are you able to sit for an hour at least now?

    I started to do SIJ PT and standing up at work, but it has made my feet and calves cold/tingly which is a new symptom. Did you experience anything like this?

    • Sunil December 8, 2014 at 5:00 pm - Reply

      My name is Sunil not “sunsil”. Assuming you are referring to me :p …..

      I can sit for an hour but have to be careful. I used to use a sit stand desk and I understand what you are saying and had the same. I also had circular pain in the hip, this was caused by the hip joint/ball not sitting properly but of course no one believed me.

      I am getting there, I still have symptoms but am hopeful of getting there. Money is an issue as is getting a job. But who cares when you have a disability you soon find out people talk a lot but do not really care, especially governments.

      With Masaki treating me I have moved along a lot further because he takes a holistic approach and he has seen someone I know who has SIJ injury. My friend told me he is feeling much better but needs ongoing treatment for a while.

      I really hope the last of the issues are resolved, I just want to be free.

    • Mary March 18, 2015 at 10:19 am - Reply

      Hi Ian,
      You may be experiencing the PNE starting to run down your legs more. I also have very cold feet most of the time. If your starting to get depressed at all I urge you to please see someone for it immediately! I’ve actually helped people by providing support. It’s the best thing we can do for each other!! That’s why I’ve left my email address on her previously. Have you went to a PNE specialist yet? If not, I can help get you to the website for doctors within the USA.

  49. Anonymous December 9, 2014 at 2:09 pm - Reply

    I cannot stress K-Laser enough. Please look this up and go to your nearest K-Laser provider. It is the only thing that has helped me heal after surgery. I highly recommend it.

  50. James white December 28, 2014 at 5:39 pm - Reply

    I am a male.have suffered over15 years.have been to every doctor there is.is there a doctor in n.c. that specializes in pudendal neuralgia that won’t think it’s all in my head.I am so discouraged. I know this is What I have
    .

    • trishy500 November 5, 2015 at 7:26 am - Reply

      James, I completely understand where you are coming from. I live in MA and it’s been close to 3 years for me. I know you can begin to feel like no one understands, except another sufferer! Which is why we are here! It has altered my entire life. I can’t imagine it lasting that long. I am being treated by yet another physical therapist who does think outside the box and I am hopeful( or fooling myself depending on glass half full/empty. Every post here has a piece of my story in it. I am reluctant to see a surgeon because, well, they do surgery, and, for me, surgery landed me here. Does anyone have swelling in the hip/buttock area? I mean visual swelling? I’ll write more when I can. It’s past my bedtime. Thank you everyone for sharing ideas and help.

      Sunil, I think I just may be with the right “team” now. I have tight muscles, gluteal tendinopathies, hamstring tightness, psas and so on :O)

      I feel all of your pain and I mean it!

      • Sunil November 5, 2015 at 2:26 pm - Reply

        After 40 plus years of hell, huge losses and lies by thieving doctors .. I am moving forward with the right treatments. I can never be cured but I am functioning much better, pain levels are lower, I can sit for a couple of hours and no more, I have reduced urgency, I can walk better, testicular pain is down substantially, burning while urinating is rare, but does happen if stressed and if I sit for too long. I am worn out by the treatments, the costs and emotional impact on me.

        The racist pigs in Australia who denied me treatments and ensured I got to a point where I was unable to take cholesterol or high blood pressure tablets, because they blooded my stomach and caused the SIJ to be stressed and pulled on the pudental nerve. Despite knowing this and my doctor asking the people at a government Health department, what was wrong with me they refused to say. I have suffered so much, I just do not feel like caring any more. I have got my Disability Pension that helps me pay for treatments. I do not know how I managed to work, get by without help, etc. all these years. Tears I have cried, the loss of a chance to meet someone, have children has been snatched from me, I hate you bastard racists so much.

        I have put together a team on the Gold Coast and Northern New South Wales, that supports me and works with me to improve my SIJ. But I had more then an SIJ injury. When the SIJ “rotated out”, it impact a lot more, affected my hip, many muscle groups, leg also impacted into my hip and was jammed in the hip area, atlas was affected and much more. I have had a lot of work done, I can no longer work, I live a simple life. I certainly want no one in my life, too many evil hateful people out their. When you are sick people take advantage of you that also includes racist doctors and money hungry one’s too.

        Most of my success has come from being determined, thinking outside the box, trying different treatments not relying on the one person for treatment. Most are there to make money not to help you. Doing research, experimenting with exercises to lengthen muscles, controlling my diet, having faith in Krishna (God) and asking Him for help.

        My journey has been hell, but I have not given up hope. I have my team and they are changing my life. Less expensive then rip off doctors who take money and drug you to a point where you no longer can feel. In fact I was given contraindicated medication that near put an end to my life, made me suicidal etc. I ended up in hospital and under the care of a psychiatrist who helped me with withdrawal symptoms.

        I am heart broken at times, seeing the devastation these evil medical professional can heap on you and destroy your life. I find it hard to trust a doctor, how do I know they are looking after my welfare not their pocket or have a racist agenda. Takes courage to give people a chance to treat you.

        I have my “self made”/put together professionals who help me now, a really good group of people, who are caring, insightful and a bit different put know what they are doing. I want to get to a point where I can be self reliant then die as there is no point to life anyway. I just want to prove to myself this could be cured or managed, after that I have nothing to achieve or want anything.

        If you are interested in knowing how I am getting let me know … I may just publish. I know I am teasing you all, you are in pain and suffering … but I hope you can feel the frustration, anger, suffering I have gone through not to mention racism and financial loss. No one cared about me, just too busy robbing me and destroying my life. I wil never be cured but I have been told I could have some what of a “normal” life.

        • Mary November 5, 2015 at 10:19 pm - Reply

          All I have to say & I guarantee other’s are thinking it is you’re an ASS for saying something like “tell me, I may publish”!!! EVERYONE on this site is in the same shape!! Whether it be for 40 years or 3 months!! I myself have had it over 10 years & I AM WILLING to help ANYONE who chooses to email me get answers!! You’re just plain old selfish & self-centered!!!!

          • Sunil November 6, 2015 at 6:24 am

            Hi Mary,

            You said .. ” I guarantee other’s are thinking it is you’re an ASS for saying something …” not an issue. If you feel frustrated and desperate to getting information, imagine what I felt like when information about my injury and treatment options was with held from myself and my doctor, fully knowing I could have a heart attack or stroke. I have given a lot of information with regards to what other areas of the body are affected when you have an SIJ injury.

            So all you could pick up on was that part of my entire post. You did not find it to be unacceptable that I was mistreated and how my suffering was prolonged, my life placed on the line, etc? Interesting !!! If you read all my posts you would have information on who I have seen and what they did. I have found new professional who are not part of the PN industry and they have moved me even further. I am assessing the treatments at the moment two of them have been very good, in fact moved me forward light years. One of the treatments is very painful, I felt like I was on fire but afterwards felt better, had ups and downs during the week but improved.

            I was going to at some stage write the names of the professionals down and contact details as well as what they specialize in, how it helped me, etc. So people in Australia can seek same or make appointments with the people I see.

            I do find people have a cult following of PN/PNE specialists and do not look outside the box. There are others who treat the cause(s) rather then the symptom(s), to treat this problem is like going through one layer at a time and each layer needs a set of skills to treat it. It is a matter of trial and error, can be costly. As in I spend $200 per week in treatments. It is a lot of money for me as I do not and can not work any longer, thanks to what my “professional health” providers did/did not do. So excuse me for being a little angry and for venting, I did not expect racism and crap that I had to go through. So I choose to experiment, try new treatments and work on myself. Much of the PN is muscular issues that affect the pudendal and other nerves. It is not all just one thing, hence you need different specialists for each layer. Anyone who thinks they know it all, is probably fooling others and themselves. All the people I have working on me, work with me and tailor their treatments to my needs. I am not treated like a blob on the table, etc. They are actually interested in my welfare as well, makes a very big difference.

            Well if you think I am an ASS, it’s okay, no issues. Please also look at yourself and the lack of humanity in you. Empathy is a great thing. I do not have to help anyone but I have been giving information for a long time.

            Wish you well .. Sunil

          • Trish November 6, 2015 at 9:43 am

            Sunil, you were venting and after reading all of your previous posts, you have been a wealth of information. I am new to this site, but was surprised at your angry post. You have every right to be angry if you feel you’ve been mistreated. I think we’ve all at one time or another been “wronged” by the medical community but I thought and still think you need to, and are, focusing your energy on getting well instead of relieving what they have done or not done. I think it’s hard for us to understand it completely, the racism piece especially. We are humankind on this website, not black, white or green(although my little thing that pops up IS green and I don’t know how to switch it so..) Anyway, living in pain for so long is a terrible thing, it alters your life. I was angry at my surgeon for years because my follow up care was so poor and the anger turned into wanting to take legal action and the whole thing didn’t help me one bit(the thinking that is) I decided to seek help elsewhere. I won’t get into the whole thing, but I was, indeed , mistreated. It won’t help me heal rehashing it, though(I’ve done that). Venting is fine, just stay true to who you really are and not who you pain is. Sorry if I sound like a know-it-all. I am not. We all need harmony here, that’s all.

          • Sunil November 6, 2015 at 6:58 pm

            Well, racism is more then bad it can be deadly. My life was put on the line. I am angry, I do not trust Australians in general I find them to be racists to the core.

            Having said that, I am improving. Can sit for nearly two hours now, have flare ups but not as bad as before but been told not to push myself or else I will end up going backwards. I will write some more later. At the moment my body is going through too many changes, I feel dizzy walking, because I am walking differently, I feel confused at times, I feel high/low as I go through treatments and see improvements then set backs. Set backs not as bad as before but when they happen affect me emotionally.

            There is a better way to deal with PN and PNE, I have not stuck with the PN(E) specialists but broadened my approach, in desperation sought alternatives to deal with the pain, urgency and all the other symptoms. PN industry focuses narrowly but forgets that the body is a whole system that relies on what I call interaction with other joins, muscles, etc. no use forgetting this and concentrating on the one spot. I have wasted time, money (lost 4 houses and lost a million dollars have next to nothing to show), my life but no more. These doctors have not got the guts to say I have to refer you on I do not know or say they have reached the limits of their knowledge. But happy to take your money.

            I will get back once my symptoms of feeling dizzy and getting used to new treatment settles down. Just grateful I can sit down for 2 hours now. More then that causes me issues.

          • Mary November 7, 2015 at 6:47 am

            Yes, I do stand by what I said or I wouldn’t have said it. I have plenty of empathy otherwise I wouldn’t offer to help others that are in the same shape. Of course I understand what you’re pissed off about! We’ve all been treated the same way by multiple doctors. Vent away…. that’s part of what these forums are for, but most of all to help others find information on what is & isn’t helping. I apologize if you have been helping people. What really got me was your statement about “maybe you would publish”. That statement in & of itself makes you seem like a total ass.?

          • Sunil November 7, 2015 at 4:42 pm

            I was trying to show what it feels like when racist doctors with hold information. Did you not pick up on that? Or is it selective reading and you think my abuse is the same as others .. ummmm … with holding information knowing I could have a heart attack or stroke is not the “normal” run of the mill abuse. I really give up.

          • Mary November 8, 2015 at 7:31 am

            Apparently you really do think you’re “alone” in all of this… I hate to tell you this, but my husband has fought to keep me alive for 10 minutes with chest compression while our local ambulance got lost 3 times despite a friend of ours driving it (names cannot be given & our house is at an odd address). So no, I didn’t read selectively as you stated!! You are far from the only person who has been screwed by the medical system!!

          • Sunil November 8, 2015 at 1:24 pm

            But the person admitted that was the case she with held information. A deliberate act.

          • Anonymous November 8, 2015 at 5:25 pm

            Hi Sunil
            I have read your thread , it is OK to vent , but what I will say is that the Australian Doctors were not raciest ,with my experience the ones i saw about my PNE will say they are experts when they are not , so they will rip you of regardless of your race , these are Doctors who have forgotten how to be a real doctor they are consumed by greed ,they will rip anyone of as long as you pay them .I have been ripped of by most of these so self proclaimed experts . I am a ordinary Aussie guy , i look back and think i was silly / naive to pay them , to me they behaved in fraudulent manner , when they say they are PNE experienced and you wait 3 months to see them , you tell them about your condition then they say well i can’t help you , don’t forget to pay the receptionist on the way out which is $300+ . Well one neurosurgeon even abused me for not sitting down after hearing that it created great pain , he said how dare you stand and look down at me , i was shell shocked , now i payed him $300 + to get abused because it created great pain when i sat down!!!, and got no help or advice !!!
            Now what i see is greedy doctors that shouldn’t be working as doctors as they give good doctors a bad name , it is their greed and their ego and unprofessional conduct that we wish that they could experience PNE themselves , if that happened we would have better Doctors treating PNE in the world .
            Now let’s not forget the physical therapists , well they are worse , they will just have a go they see us as money walking in the door not as a human with certain type of pain [PNE] , it is a business for them as well , again they don’t see ethics they are not taught that at uni or college they are taught everyone is a income $$$$$$.
            So it is hard to find the genuine doctors and physical therapists because of the others all trying to make a living of us who are in PAIN.
            So Sunil race has nothing to do with it they WILL screw anyone over for money.
            Some will call it capitalism , some will call it a opportunity , some just call us just $$$$$fodder for their wallets .
            Chronic pain is BIG BUSINESS worldwide and all of us usually get to experience being ripped of one way or another as we try to be pain free.

          • Pelvic Guru November 8, 2015 at 5:40 pm

            May I just share that there are some very genuine and sincere medical professionals out there who want to help those with PNE. At times, I lose sleep thinking about the agony my patients experience. I am sorry you all have experienced bad situations. This is why I do what I do because I’ve heard the bad experiences and I want patients to have a better experience. I know the costs can get high, but not all places and costs are the same. My evaluations, for example, are 2 hours plus extra time to document it all for the patient. We spend many years training and learning (and paying for education), so it is an income but not all of us are just trying to make a profit and nothing else. I have a long wait list. I sure wish it wasn’t as long for patients- but we do the best we can. I’ve been trying to train others to meet the demands. I truly hope you all get the help you desire and need!!

          • Sunil November 10, 2015 at 6:12 am

            I really wish you all the very best. People will skirt around the issue of racism and most are avoiding it and supporting it. As they did in Pudendal Hope. I will no longer be contributing, find your own way forward. If you have such a hard heart, not saying a simple thing like “racism is wrong” .. I too have a right to discriminate and not disclose what had pushed me forward after 40 years plus of suffering.

            Good luck to you all .. bye.

          • Mary November 10, 2015 at 10:26 am

            Only someone who is “hung up” on “race or ethnicity” would really act as your acting!! It’s really quite sad!! I’m sorry to say this, but you’re also very self-centered & more arrogant than the “racist” doctors whom treated you!! You shouldon’t seriously consider thinking before you speak!! You seem to want to “attack” & presume what everyone is supposedly thinking, doing, or saying an chose to ONLY interpret (or twist) it in the way you “THINK” it should be interpreted!!! It really does make me have the greatest sympathy for you!! I also hate to break this to you, but you’re not nearly as important to everyone here like you seem to think you are!!!! People WILL find treatment with or without your assistance!! Especially being you’ll NEVER get “published” because NO editor in their right mind would EVER “publish” something in which the potential audience is so limited!! Have a nice life Sunil!!!

          • Anonymous November 11, 2015 at 4:13 pm

            Hi Sunil it sad that you leave but there is a lot of anger in you from being mistreated by racist doctors or doctors just pretending that they are PNE experienced , it is Ok to vent we all get frustrated with the system when we can’t find practitioners who can give us the right treatment and that is what this site does it is a opportunity to spread the good work of good practitioners .
            Well racism is wrong and you will not find it on this site we belong to the same same family PNE .
            If it was just vent it’s OK , remember you can give other people hope and be a better person than the racist ones . good luck if you leave .

      • Anonymous November 6, 2015 at 12:57 am - Reply

        Thinking out side the box maybe have a sit stand x-ray of your coccyx as that was the cause of my PNE and every specialist and every physical therapist had over looked it . Remember your S.S. and S.T. ligaments have a partial attachment to the coccyx so if it is deviating it will tighten those ligaments with the PN going between the ligaments it can compress it .
        Something to look at as well

        • trishy500 November 6, 2015 at 9:03 am - Reply

          I am having trouble finding out where I first posted and why it isn’t showing up. I’d like to see who gave me the last comment because it is helpful. Before I tell my story, I am hoping to see where this lands. I am not blog savvy, just pain savvy!

  51. claudia January 28, 2015 at 10:35 pm - Reply

    Another question: What is the recommended shape for a cushion/pillow? I am still unsure of the route of the pudendal nerve. Thanks again, and I sure hope Daniel is doing better! I think cycling has caused my problem as well.

    • Mary March 18, 2015 at 10:11 am - Reply

      Dear Claudia,
      The pillow needs to be in the shape of a big “U”. Keep the open part towards you butt to help alleviate stress on the nerve.

      • aircraftguru March 18, 2015 at 8:32 pm - Reply

        I have purchased 2 “U” shaped pillows… they’re at the Cracker Barrel Restaurant’s Country Store… about $10…. I keep one in the car in the driver’s seat … the other one in the den…. it does help…. I’ve had chronic pelvic pain for nearly 8 years, and have been to a very long list of doctors, including 3 urologists,and a pain specialist (all are very good) .. but my case is the worst they’ve seen. I’ve had Pudendal Nerve Blocks, but they’e lasted only a couple of weeks. I’m on 4 to 5 300 mg gabapentins/day… 1 every 4 hours … plus Norco 10-325’s … 6 to 8/day… one every 2 hours during my waking hours… and all this was still not taking care of all the pain… when I wake up in the morning, there’s zero pain… and it starts going downhill by about 10 am and peaks from about 3 pm to bedtime. It seemed to all start with an infection in the prostate area 8 years ago this coming May … I waited to long to go to the emergency room (we were on a trip at the time) … The ER doc stated I had an infection in the prostate area …. I was given a Rx for Cipro which knocked out the infection quickly … but apparently nerves somewhere in that area were damaged from the infection. I even went through a Laparoscopic Prostatectomy at the Huntsman Cancer Center in Salt Lake City a year ago (the surgeon was excellent … and only needed a Depends for about a month until things healed up) … and they found cancer in the tissue they removed (yea … the cancer is gone… I’ve known guys who have died from prostate cancer because the symptoms were so subtle that by the time the cancer was discovered, it was too late for them) ….. but most of the pain was/is still present. My pain specialist tried one more thing recently which seems to give some additional help… and that is Compounded Suppositories…. prepared at a compounding pharmacy… with contain 3 items: Diazepam / Baclofen / Bupivacaine (2.5 mg /20 mg /5 mg) …. I believe the first 2 items are for muscle relaxants …. and the Bupivacaine is for pain. I usually use about 1 per day … starting about 1 or 2 in the afternoon, though 2 per day are allowed when spaced out about 6 or more hours. They seem to last about 6 to 7 hours. I started with 1 mg Bupivacaine … with a quantity of 10 .. to try it… but that wasn’t enough… so we’ve been incremementing up at 1 mg intervals… and am now at 5 mg as of yesterday. Once the pain medication which is effective is established, I’ll order 60 at a time. Since it’s compounded, there’s no coverage by my insurance. The cost is about $60 when buying that many at a time. My pain specialist did his resicency at the Mayo Clinic. It would seem that they could cut the nerve causing the pain, but no doctor wants to take that path.
        Good luck to all of you who are dealing with this….

        • claudia March 18, 2015 at 8:57 pm - Reply

          thank you for the pillow info, I have really lucked out-since I gave up my spin class my symptoms have disappeared-thank God! I keep all of you in my Prayers!

      • claudia March 18, 2015 at 8:59 pm - Reply

        thank you Mary, I appreciate the info!

    • Mary Strong-Spaid July 10, 2015 at 11:24 pm - Reply

      I have been sitting on one of those airline neck rests—in reverse—with the open part in the back. It works great. The neck rests do tend to get flattened out over time, and when that happens I just get another one. They aren’t that expensive. I can’t ride in a car without it. Gives support to the legs but keeps the pressure off of the middle and the back areas. http://www.bedbathandbeyond.com/store/product/samsonite-reg-magic-2-in-1-travel-pillow-with-pocket-in-charcoal/1042584407

      • Mary July 11, 2015 at 11:36 am - Reply

        Cushions for sitting-
        Hi!~
        Please go to a “surplus center” that sells thicker foam. I suggest a minimum cushion of 3 inches & make sure it’s a bit dense. That way it’ll hold up longer. If your a heavier set person than I suggest a slightly heavier foam (4-6 inches). You want to make sure your crotch doesn’t touch the actual surface that you’re sitting on! Make sure the cushion fully fits the size/shape of your entire buttocks region! (Otherwise you’re still going to be very uncomfortable!!) Once you have the cushion at home, I was you to cut a larger “U” shape. Make sure it’s large enough so that your crotch hanging through the “U”!!
        The “route” of the Pudendal Nerve…. It comes out of your spine in the “S1-S4” (I believe). It runs past the Ischial Spine & through the “Alcock Canal” (2 of the most common entrapment areas). It ends right in the “Perinium” area (hence anal, vagina, scrotum, & penis pain).
        The best thing we can do for ourselves is to be informed, informed, informed!!!
        95% of doctors know NOTHING about Pundendal Nerve Entrapment!!! This means we HAVE TO BE our OWN ADVOCATES!!! Learn AS MUCH as you can!!! Research, research, research!!!
        Please feel free to contact me if you wish. My email is MaryLHarley@yahoo.com. I’m just a fellow PNE sufferer since 2004-2006 (misdiagnosed many times during this period). I’m willing to help in anyways I can, even if it’s just email support.

  52. […] We must impart to patients that they shouldn’t assume PT or a physician’s care “doesn’t work” just because they or someone else had a bad experience. It may be worth finding another provider of care. Obviously, our mission is to make sure more healthcare providers are trained to provide the best patient experience with this type of diagnosis. There is hope! […]

  53. Mary March 15, 2015 at 9:22 am - Reply

    Hi!~
    Has anyone heard of any PNE doctor in Minnesota or North Dakota? I’d to try having more injections. I’ve had both the injections & the surgery. It’s now been years since my surgery & my pain has gotten worse. I was on Morphine til it quit working & I started feeling unmanageable amounts of pain. I went on Suboxone, but that also isn’t giving me that same amount of relief it did the first few months. I’ve had my GP do general buttock steroid injections & that would help somewhat for a few days. However, it would only last a couple days. Please let me know if you’ve heard of anyone near MInnesota.
    Thanks!
    Mary

    • Ruth Pasfield March 15, 2015 at 11:48 am - Reply

      Have your doctor call a doctor that does know what to do. My doctor get’s calls from all over the world from other doctor’s. His name is Dr. Peters and he works out of William Beaumont hospital in Royal Oak, Michigan. I have found the only thing that works for me is Lyrica with Valium to put up your vagina. It relaxes the muscle around the Pudendal nerve. Good luck!!

      • Wendy Paley March 27, 2015 at 5:21 pm - Reply

        Hi Ruth,

        I was given valium 5mg suppositories to use vaginally about a month ago. They cause me a lot of burning and not much relief. How many mgs of Valium are in yours?
        Also, I just started Lyrica a month ago but it makes me so spacey? How many mgs of that are you taking?
        Thanks so much for your help. I am so glad these two things are helping decrease your pain.
        Wendy : )

  54. WIlliam Payne May 12, 2015 at 5:05 pm - Reply

    I am veteran and left the military in 2009. I’m 29 years old. Shortly after enrolling into college, I started having sharp pain in my anus, which over time turned into a dull throbbing pain that prevented me from sitting down for a long period of time. Now I have to sit on a donut to help keep the pain away. I cant wear pants or a belt as the pressure is too much over a short period. My life has taken a huge hit due to this problem. Losing a job and its hurting my relationship with my wife and kids.
    Ive seen a plethora of doctors at the VA(Useless) and specialists over the past 5 years. Had more Prostate exams than most men have in a lifetime as the first “Diagnosis” was prostate. The diagnosis has changed many times and I have been held hostage by this problem ever since. I have to take laxatives and Codeine for pain management. But still no clear sign of a cure. My doctors have been befuddled to say the least. The pain narcotics that are necessary to help me live a more normal life have sometimes even led the VA to just believe that I am addicted to pain meds, since the cant seem to find a clear reason why I am suffering so much.
    Recently my doctor somehow stumbled on a idea that it may be chronic pelvic pain(nerve). But with no clarity or no sign of relief, I decided to do my own way searching online and somehow finally found PN. ALL the symptoms match, and I finally feel as though I have some answers as to what has been happening to me. Although I still don’t understand how this problem began. I do not have ANY family history of this medical issue at all. The only thing I can think of is weight lifting may have caused it.
    I AM DESPERATE. I need answers, and a Doctor who can help or talk some sense into my VA Doctor. I have been praying everyday for relief, and an end to all this suffering that I deal with every single day. Someone please help!

  55. Anonymous May 14, 2015 at 5:24 pm - Reply

    have a look at http://www.pudendalhope.org more info there as well

  56. scooternooch May 31, 2015 at 11:04 pm - Reply

    Do you have any information on endometriosis on the pudendal nerve?

    • Pelvic Guru June 1, 2015 at 6:56 am - Reply

      That most definitely occurs, but information in it is limited. I’ll see what I can find and post it if it is noteworthy.

      • Anonymous June 1, 2015 at 8:06 pm - Reply

        Some of the most painful endometriosis lesions are those that invade the pelvic nerves.
        For example, endometriosis of the pudendal nerve (PN) can cause severe neuralgia (nerve pain) in those places that are innervated by this nerve, such as the anus, labia, perineum, rectum, vaginal area, and urethra, just to name a few. However, the pain may radiate beyond these areas. Reported symptoms include stabbing pain, numbness, bowel symptoms, and painful intercourse. Endometriosis of the PN is often mistaken for other conditions, such as pelvic floor disorders, interstitial cystitis, and musculoskeletal disorders.

        Endometriosis that affects the obturator nerve, which crosses through the pelvic region and innervates the inner thighs, can cause pain that radiates down the leg or toward the groin area or hips. Another way that endometriosis can cause leg pain is when it affects the pudendal nerve, which innervates the lower vagina and external female genitalia. As with the obturator nerve, any areas connected to the pudendal nerve can become painful due to the endometriotic lesions. Endometriosis has also been found traveling along the obturator nerve to the adductor compartment of the thigh (P Waer, et al, Japan Journal of Radiology, 2012), which can cause pain in the hips and thighs.

        Advanced surgical techniques needed to treat endometriosis of the nerves
        Because the nerves cannot safely sustain traditional excision surgery, an entirely different technique is required to remove the endometriotic lesions. There are only a handful of surgeons in the world with the advanced skills needed to perform these extremely complex surgeries. Not only is Dr. Nezhat among the few capable of performing such extremely difficult surgeries, he’s also the one who pioneered these advanced techniques using minimally invasive methods.

  57. scooternooch May 31, 2015 at 11:10 pm - Reply

    Do you have any information about endometriosis on the pudendal nerve?

  58. Shane Barnes June 10, 2015 at 9:22 am - Reply

    Hi, i’ve had similar symptoms. Started in left testicle (only lasted a week), then radiated into pelvis area (burning urination, urgency, have had that since day one almost) and low back pain (seems to change from tailbone/sacrum/lumbar and is more intense at times & not as bad for a few days at a time). It also correlates with bowel movement irregularity. Never had these problems in my life, no major injuries or surgeries in the area. Worked out for the last 3-4 years, nothing overboard or crazy. Does this sound familiar to anyone else, specifically starting in the testicle then moving into pelvic area/low back?

    • Mary June 11, 2015 at 1:02 am - Reply

      Hi Shane,
      The symptoms most certainly sound like PNE (PN at the very least). I HIGHLY suggest that you go to the PudendalHope.org website. Go to “List of doctors. There you can put in what state you’re from in the USA (or postal code for other countries). Then the doctors in your area will appear. I made an appointment immediately!! I suggest you do the same. Then you’ll at least have a “formal” diagnosis to go forward with. Feel free to contact me for any questions or just want one on one support (marylharley@yahoo.com).
      Good luck!!!

  59. Michele June 24, 2015 at 10:57 am - Reply

    Thanks to all that have shared their stories! It is hopeful that there are professionals out there that deal with PN issues. I have been dealing with similar pain since 2008/2009; 4 surgeries and 10 specialists later (not including 3 different PTs (2 pelvic), accupunture, OMT treatments, naturopathic dr.) 2 months ago a doctor mentioned PN for the first time! When I read about it, I broke down as I have 80% of the symptoms. Ironically, I have hope again. The Dr. I saw acknowledge he has not dealt with this issue since his fellowship, years ago and suggested I go to a ‘teaching’ hospital for potential nerve block/ second opinion. I live in Maine, so he suggested Pain clinic at Mass. General in Boston. I have an appointment in July, however I cannot get a clear answer if this Dr. is PN knowledgable. Any Dr. recommendations in New England? Dr. Conway has been mentioned many times, however, I’m not keen on anymore surgeries (last one a total hysterectomy) and still in pain:(. Any info. warmly welcomed.

    All the best,
    Michele

  60. Tess July 7, 2015 at 10:02 pm - Reply

    I am 53 yrs old. I have been dealing with this issue for over 10 yrs. I have had bilateral pn injections with little improvement. Now the nerves in my tailbone and legs are affected. I have had pt also with no help. Pain medicine does take all symptoms away however, doctors do not like issuing them anymore this is decided after that was the treatment they started me on 10yrs ago. Now I am left out to dry with all this other crap that does not work. Lyrica dropped my blood pressure which resulted in shattering my ankle , breaking my foot in 3 places and snapping my collar bone in half…NASTY STUFF. Gabapentin gives me the shakes and I can not take nuerotin because of my reaction to Lyrica.

  61. Lovene July 9, 2015 at 8:12 am - Reply

    Please help my relative. He has been suffering with pudental nerve pain for 3 years. He is up almost every hour during the night with severe pain. He is exhausted!! We live on east cost of US. Is there anyone that is a specialist with the pudental nerve pain for men. We have been to John Hopkins, Cleveland, Penn State Hershey, and others in between. He has had injections to block nerve pain, and today he is having another surgery. He has taken all kinds of meds including suppositories (costs $2,000 per month) which helped for a short time. Please give us some hope here.

    • Mary Strong-Spaid July 11, 2015 at 12:05 am - Reply

      I left a comment below your post. I don’t know if you will see it, because I didn’t hit the “reply” button directly under your post (my mistake). Please come back to this blog and read my comment. I think the lady therapist (who does pudendal nerve therapy) in Northern VA might be able to help you. I left a link to her video. Her name is Kathy Hess.

    • Tess July 11, 2015 at 3:21 pm - Reply

      I see a Dr Abdelmalak in West Lake Ohio. I found him through Cleveland Clinic. His patients come from all surrounding states because he is a pain management doctor that specializes in PN pain. Men and women both flock to this man. My first set of injections completed in 2013 gave me 8 months of 80% relief. However, it did come back as he said it could. This current set of injections are not helping as much but remember everyone is different. He may be able to help. His number is 216-476-7331. Good luck.

  62. Mary Strong-Spaid July 10, 2015 at 11:53 pm - Reply

    I am on the east coast, U.S.A. and also suffer from pudendal nerve pain. There is a physical therapist here in northern Virginia (Woodbridge/Dumfries area) who actually understands the pudendal nerve and knows how to help. I believe she also helps men with pudendal nerve pain (I see many men coming in to see her for various ailments). She knows how horribly painful the pudendal nerve can be. I too was up every hour of the night (and sometimes every 20 minutes or so), and was completely exhausted. It gets to the point where life feels totally impossible. I asked her once if men could be treated for this, and she said yes—although it is a little different approach. I recommend that you contact her and ask if she can help you. It certainly is worth a try. Some people refer to her as a “body mechanic.” She is very good. Here is a video that she made.
    https://www.youtube.com/watch?v=b4SMf8nCTgI

  63. Russ Smith August 14, 2015 at 1:39 pm - Reply

    Dear tracy I am a man in the buffalo ny area who is dealing with pudendal neuralgia symptoms..do u know anyone around here who can help me? Thank you so much

  64. Ashley Banks August 18, 2015 at 2:05 pm - Reply

    Hello my name is Ashley Banks, and I’m writing in for my mother. Her problem started when she was prescribed Chantix to help her quit smoking. She took the medication for 2 months and in January of 2009 she became extremely constipated. She hadn’t had a bowel movement in almost a week and consequently strained to have one. From that moment on her life changed. She is in pain 24/7, sometimes unbearable, and can no longer sit for any length of time. She went to her gynecologist and told him about the pain in her perineum area. He sent her to multiple doctors (oncologist, internist, neurologist, plastic surgeons, chiropractors, etc) They tried several procedures and ran a few MRI’s. The procedures took place in the order that follows:
    1. Colonoscopy with a scan of the pelvis with nothing found.
    2. Physical therapy for 4 months, doing a tens procedure followed by deep massage.
    3. Perineum nerve block.
    4. A site injection with 3 medications (botox, a steroid, and pain medication).
    5. A prudendal nerve block.
    6. Several adjustments from a chiropractor
    She has been prescribed Elavil, Gabbapentin, Neurotin, Cymbalta, Savelle, and Lyrica – nothing worked on the pain. All they do is mess with her head, but she’s still in pain. Not being a person who likes to be on medications, she quit each one after a few months. She was also prescribed several compound hormone creams, none of which provided any relief. At this point she contacted Mayo Clinic and shared all her files and story with them. After the board at Mayo reviewed her files, they turned her down saying they didn’t think that they could help her.
    She does have a scar between the vagina and the rectum from a surgery for a Bartholin Cyst in 1980 but that never bothered her, not until this happened. Now her doctor has given up on her, and told her (and I quote) “ You are not the only one in this world that has to live with a pain” and suggested she visit a pain management center. Believe me she knows that, and sometimes she says she is ashamed of herself when she see others in worse shape. She just wants to be able to sit and not have to stand for the rest of her life… She can’t get down on the floor to play with her grandson because it hurts too much. She can’t walk around for a long time, she can’t even sweat because it irritates the area.
    Thanks in advance for taking the time to review my mom’s case.
    Sincerely,
    Ashley Banks

    • Ashley Banks August 18, 2015 at 2:08 pm - Reply

      Sorry for rambling… my point really was to ask if you knew of any doctors in Louisiana or the surrounding areas that deal with Pudendal Neuralgia. We’re thinking that’s the next avenue we should explore to get her some relief. Thanks again!!!

    • Mary August 20, 2015 at 9:01 am - Reply

      Ashley, please contact me & I’ll try to get you into the right direction as to what doctors to actually see. I’ve had this a very long time myself & try to assist people both by helping them find appropriate doctors & just emotional support via email, phone, etc. My email address is marylharley@yahoo.com.
      Sincerely,
      Mary

      • Anonymous August 20, 2015 at 12:21 pm - Reply

        Just sent you an email Mary! In case it gets lost in cyberspace, my email address is abanks479@gmail.com

        Thanks so much!
        Ashley Banks

  65. Lanie Bryant August 18, 2015 at 2:36 pm - Reply

    Im looking for a doctor in Texas who puts in stimulators for pudendal nuralgia. I have tried everything under the sun. Its time to put in a stimulator.
    Thanks

    • Pelvic Guru August 19, 2015 at 9:44 am - Reply

      Hi Lanie – neurostimulators are still in the research phase for helping with pelvic pain/pudendal neuralgia. They work well for overactive bladder, but there aren’t a lot of cases that have been successful for this type of pain. Dr. Kenneth Peters in Michigan (I believe) is studying this. Have you connected with Sara Sauder in Austin? She has taken our pudendal course and is excellent with this condition.

      • Nancy August 19, 2015 at 9:22 pm - Reply

        My husband has suffered with PNE and severe pain for 5 years. Three years ago, he had a neurostimulator implanted. It was removed about a month ago. Through bio-feedback, with a PT, it was determined it actually exacerbated the problem by tightening the muscles even more and increasing pain. He had not used it for the last year it was in. For my husband, at least, it was not the answer. The only relief comes after a deep sleep (which totally relaxes the muscles). To get any relief with the stimulator, it had to be turned way up and resulted in the tightened muscle
        .

        • aircraftguru August 20, 2015 at 1:49 pm - Reply

          I have PNE for the last 8 years …. Tried everything …. My urologist installed a neurostimulator wire in my spine …. And the device imbedded above my right hip pocket …. For two years (4 years ago) and it did not help with the pain. I had it removed before a MRI. I even had a laparoscopic prostatectomy done (Huntsman Cancer Center in Salt Lake City)and that did not take away the pain. But the good news was they found cancer in the tissue they took out …. Yea ….. But the pain is still there. I get pudendal nerve blocks but they don’t last very long for my case. I am on major pain meds plus a pain suppository which has bupivicaine in it (2 per day) …… Fr my pain MD who is the best in the area.

    • Mary August 20, 2015 at 9:03 am - Reply

      Go to PudendalHope.org there’s a couple of FABULOUS doctors in TX. It will be listed by state. If you need help or anything just let me know. My email is marylharley@yahoo.com.
      Sincerely,
      Mary

  66. Juvederm Leeds August 19, 2015 at 9:36 am - Reply

    This is really great health information. I admire you to share this useful topic.

  67. […] Pudendal Neuralgia – There is Hope! | Pelvic Guru – Who’s even heard of Pudendal Neuralgia? How about Pudendal Nerve Entrapment? (** Added 2/27/15 Please also read the newest blog: 5 Things We Wish You Knew About … […]

  68. Marianne Sturgeon September 2, 2015 at 4:25 pm - Reply

    I live in Tennessee cannot find a doctor here experienced in Pedundal neuralgia. I am strongly considering moving in with my mother in Ocala Florida as my husband believes we should be able to find a doctor in Orlando or Tampa area. Can anyone recommend a doctor ? I have been 2 1/2 years in pain at the end of my rope.

    • Pelvic Guru September 2, 2015 at 4:32 pm - Reply

      Melissa Kubic is an excellent pelvic pain PT in Chatanooga, TN. She can also help you find medical consults.

  69. selwyn September 7, 2015 at 11:02 pm - Reply

    Do you know any dockers in jhb that specilize in pudental nearve block

  70. feri September 8, 2015 at 11:35 am - Reply

    Hi
    I have some nerve pain from my basin and it go to my leg. my penis is 70% numb but i have sexual behavior and correct erection and ejaculate but with penile numbness. I didnt go to Dr yet but i think its because of my pudendal nerve mean pudendal nerve entrapment. i have pain in my tailbone region about 7 year and penile numb about 3 mount.
    I decide to go to doctor and i hope to become cure.
    sorry because of my poor English.
    thanks

    • Pelvic Guru September 8, 2015 at 11:38 am - Reply

      Numbness may be due to a lack of blood flow. This can happen from medical conditions (heart, vascular, diabetes) or many other local compression factors. May be from spine or pressure at/near prostate or pudendal veins/artery/nerve region.

  71. Mary September 9, 2015 at 5:41 am - Reply

    Hi!
    Are you able to get to a Pudendal Nerve doctor? Are you located in the USA? If not, what country are you located in?
    Just wondering cause I’d be willing to try & help you find a Pudendal Nerve doctor if you aren’t seein one yet.

  72. Karla Meranto September 12, 2015 at 11:14 am - Reply

    Seeking help with what I believe to have, pudendal nerve problem. Have been in chronic pain almost five months and the pain is becoming worse with no relief. Spent months going to my GYN who after finding nothing wrong with me through ultra sounds believed it to be stress, that was like saying to me your pain is in your head. My chiropractor was the one who said from day one it was a nerve. After a lot of research on my my own I located info on pudendal nerve and I have nearly all the symptoms. I’m tires of going to doctors that act as if I’m exaggrating my pain. This pain is interfering with my everyday life and most importantly my job. I’m in law enforcement which requires me to be healthy not on any altering meds as well as wearing all the gear makes the pain worse. I’m scared and feel helpless. When I called to make an appt with a neurologist they were not very optimistic when I said pudendal nerve. I don’t think any doctors in my small community deals with this. If I can’t work I can’t support me and my daughter. This is becoming depressing.

    • Mary September 13, 2015 at 5:23 am - Reply

      Hi!~
      I want you to go to PudendalHope.org. Click on list of doctors & find one closest to your area. Your welcome to write to me & I’ll gladly help out with this. I’m also willing to help with emotional support (as much as possible ). My email address is marylharley@yahoo.com. I’m not a doctor or anything…. Just another long-term PNE sufferer (since ’04-’06 or so). Talk to you soon (if you so decide).
      Thanks!!

    • Pelvic Guru September 13, 2015 at 10:27 am - Reply

      The pain is not in your head. So sorry you are dealing with this. Where do you live?

  73. Paul September 28, 2015 at 10:47 am - Reply

    Hello Pelvic Guru, can you recommend someone in Toronto or surrounding area? Thanks

    • Pelvic Guru September 28, 2015 at 10:49 am - Reply

      We may be teaching a pudendal course in Toronto in the near future. Recommend Nelly Faghani or Carolyn Van Dyken

  74. Elizabeth October 7, 2015 at 3:50 pm - Reply

    Do you have any physicians to recommend in the Chicago area? Thanks

    • Pelvic Guru October 7, 2015 at 3:54 pm - Reply

      Drs. Frank Tu or Colleen Fitzgerald. Both fantastic and on the International Pelvic Pain Society Board with me. ~ Tracy

  75. Trish November 6, 2015 at 9:29 am - Reply

    Found my post. Sunil, I too, was surprised at your post. It didn’t seem to fit with what you had written previously. In any case, Anonymous, thank you for the advice of getting a sit and stand x-ray.

    Here is a synopsis of my story:

    Nearly three years ago(2013), my hip gave out in a grocery store, the carnage held me up. The pain continued to worsen daily and weekly to the point I couldn’t walk. It was discovered I had a hip Labral tear. I also have hip dysplasia but never had issues with it until age 50 at the store. Surgery to debride the tear took place a few months later and they shaved the bony abnormally that was causing impingement. I never fully recovered. The catching pain was gone, but the nerve pain worsened. Prior to surgery I had swelling and buttock pain and pain in Trochanter region. Here was my pre-surgery treatments:
    1. Bursa injection- a day or two relief
    2. 2 or 3 hip joint injections before the surgery
    3. SI joint injection- all just gave a day or two relief.
    4. PT to no avail

    Post surgery- PT 3x a week for months, little healing going on. Then I sat on a hard chair Christmas Eve and that’s when the worst of it began and hasn’t stopped. That was a few months after my surgery. Medical history

    1.Had 3 hard labors for 3 great kids
    2.Had Endometriosis since HS until my hysterectomy and prolapse repair in 2004
    3. Had multiple laporoscopies prior to hysterectomy.
    4. More cortisone-more PT- some help. Not enough arthritis for a hip replacement
    5. Gabapentin, Percocet, NSAIDS, tried pelvic floor PT-worsened symptoms.
    6. Meditation, prayer, psychologist for pain management(all help a little)
    7. Partial gluteal minimus tear
    8. Gluteal tendonopathies
    9. Annular tear at L4 L5.

    Did any of us know we’d be discussing pillows and our private parts on-line? I was diagnosed with posterior femoral cutaneous nerve damage by a neurologist but that’s all I’ve done. I really don’t want invasive testing. The pain is so bad.

    Does anyone have swelling? I have buttock swelling (one side) and the hip swells with any pressure, sitting OR standing. We can’t all live our lives lying down on our sides with pillows between our knees!
    This is a great website. My full time job is finding out what helps my pain. I won’t give up and no one here should either. We are all in it together and only someone going through it understands. None of us want our identity to be that of pain.

    • Esme Janse van Rensburg November 6, 2015 at 10:33 am - Reply

      Hi Trish, I live in South Africa and my symptoms started on the 23rd April 2012 after I had my coccyx removed. The amputation was done higher up in the spine and because i was left with a very sharp bone end, the ortheopeadic surgeon shaved the bone to form a curve for when I sit. I think that is where the damage was done, because the Pudendal nerve is so small and really UNKNOWN in our medical society, the doctor did not take into account that he could damage this nerve. After 2 years of excruciating pain, driving from one specialist to the next and costing me hundreds of thousands of rands, I googled my symptoms and realised that I might have PN.

      Every doctor I saw diagnosed me with phantom pain, told me to have more intercourse (it’s clear that the Dr’s who suggested this does not have an incling about where our actual pain is!!) I was given Lyrica etc to relieve the symptoms. No sucess. Then I heard about a well known neuro surgeon, and I have to say he tried everything he thought could help, to no avail. Had Rhyzotomy’s, nerve blocks, implanted a neuro stimulator, PT etc. He also diagnosed me with Fybromialgia. It is however very interesting to read about your gyneacology problems. Same with me. Also early stages of arthiritis. Also my right hip is very sore whether I sit or stand. Only lying down helps to ease the pain a bit, but I can’t lie down for long because of scarring in my back after the neuro stimulator implant. I was also given Oxycontin 50mg a day which did not help at all.

      What I found to help is Cymbalta 60mg, 2 x Synaleve tabs 3 x daily and an inflamatory (which helps a bit for the Fybro). If you haven’t used this combo, it’s worth a try. Sometimes I “reset” my system with ordinary meds especially if I had a bout of intense pain. 2 x Disprins (1000g aspirien) and 30ml Stillpane syrop (used for fever for babies). I will take this just before going to bed. I don’t know why it works, but it does help to stabalize the pain levels.

      You are right, we are being defined by this illness. The first thing family and friends ask is “how is your back”? Unfortunately I am also extremely under weight which makes sitting harder and no amount of mass gainers help. It is such a difficult struggle. I cannot find any doctor in my country with knowledge about this illness and makes me feel very alone sometimes …. and scared too.. I have to grow old like this! But thank you God, He gave me an amazing family who really understands what I’m going through. The only sad thing is that because I am unable to do so many things, they also abstain from doing fun stuff like horse riding, motorbike riding, camping etc. Such a shame!

      But keep the spirits up!! Although we all battle with constant pain, we can still see the sunrise and sunset, talk with dear ones, walk (even with “round” feet) through the rain, feel the hugs and kisses of our loved ones and sometimes the lucky ones can even hold a baby! What a joy!

      I’ll pray with you for a medical miracle!

      Esme

      • Trish November 6, 2015 at 1:22 pm - Reply

        Esme,

        Thank you for your well-thought out response. Unfortunately I cannot take Cymbalta. I’ve tried it and had a severe reaction to it. Like almost everyone else here, googling our symptoms led us to this difficult to diagnose diagnosis! I printed out the info from the HOPE website and took it to my primary care doctor and she believed me. She had been watching me suffer (still is) and going from specialist to specialist. It was only when I went to my Physiatrist that she linked the pelvic surgeries to the places I was having issues. She didn’t however, ever mention PN or PNE. I brought it up to my treating Orthopedic surgeon(not the one who performed the surgery but rather the kind surgeon who took over my care) and when I mentioned it to him. He sheepishly looked down and said, “During hip scope surgery the pudendal nerve is at most risk” It was validating in many ways, but I do with he had spoken up. I was not crazy (yes, I was beginning to question my own sanity!)

        Like you, I find peace in the moments. The good moments; of which there are plenty.

        Why did you have to have your Coccyx removed? That sounds dreadful in and of itself!

        Gabapentin helped me initially but I can’t take over a certain dose because of side effects. The pool helps too. Plenty of prayers as well!

        Thank you. I wish you well too.

        • Esme Janse van Rensburg November 6, 2015 at 3:58 pm - Reply

          Hi,

          I fell off a flight of stairs (13 of them) on my bum! It was actually so funny at the time.. I was talking to my daughter on the phone when my foot slipped and down I went. She told my afterwards she just heard “ooff” and then the phone went dead. She phoned my husband and told him to get home asap because it sounded as if the stove’s extractor fan fell on my head! Well, the tail bone was a goner and after a very perculiar drive to hospital with me sitting on my knees on the front seat, facing backwards, the doctor on duty told me sorry old girl, nothing to be done for you, the bone will grow on by itself. Well it never did and sitting became so painful and I had steroid injections and all sorts of funny cusions to sit on and then my dr recommended to remove the tailbone. That was 7 years after my tumble down the stairs. In hindsight – obviously I would rather deal with the tailbone pain than with PN, but… Life happens and I believe that there is important lessons to be learnt by people going through this. The most important one is to be thankful that I am alive and I can still contribute to my family even in small measures.

          God bless you!

      • Mary November 7, 2015 at 7:00 am - Reply

        To the person from South Africa,
        Please check out this website. It has the name of a PNE doctor in South Africa on it. Just scroll down the page a little ways. I can also give you a medication name to try. If you want that informarion my email is marylharley@yahoo.com.
        Pudendalnerve.com.au

      • Sue May 13, 2016 at 5:20 am - Reply

        Hi Esme
        I am living in South Africa with the same problem, is it possible to contact me on my email suzannev81@gmail.com, so I can see which doctor you saw and medications that you have tried if you are still on this forum.
        Thanks
        sue

  76. Anonymous December 13, 2015 at 9:40 am - Reply

    Hi there,
    I’m from Ireland and hoping for some gems of info….
    I had a baby 10 months ago and about 2 weeks afterwards I started to experience an intense wet feeling down around my labia and I was convinced I was!!! I also felt like there was something in my vagina, so initially I thought I had prolapse-I don’t. My episiotomy didn’t heal properly externally so I thought perhaps it was this-I had this repaired but it has made no difference. I feel like I constantly need to re-adjust myself down below-it helps very temporarily but then it’s back to square one.
    I have been back to my obstetrician who said “give it time”. At 12 weeks post-partum, she referred me to a urogynae in case she was missing something. He has no idea to this day why I’m experiencing these sensations. Due back to see him on Tues where I know he’s going to say “take these drugs”, even though he doesn’t know the cause of my problem.
    I’ve been attending the best women’s health Physio in the country-she feels I have a very high tone pelvic floor, with trigger points so she has been treating that and elements of my musculoskeletal system-I’m also doing my own internal Physio myself daily (I’m a Physio myself).
    From what I’ve read, issues with the pudendal nerve present with pain….
    I have NO pain, just this consent feeling of wetness, like I’ve just been intimate with my husband. Incredibly upsetting when you haven’t been for practically a year. 😞 It just feels SO gross.
    The other anomaly is that things are better when I sit-it’s really only when I move about that things feel horrible. I’ve gone from being a very active person (both in my work and as a hobby) to now not wanting to even go for a walk (well, I REALLY want to but the thought of walking and having to re-adjust to try to get the sensation to go away just makes me decide not to.)
    Of course, I feel very down about this. I have a beautiful daughter, but have had a miserable maternity leave. My relationship is struggling. I’m struggling.
    The only thing I can think of is that I’m breast feeding still, so is that having some kind of an impact? All healthcare professionals have said no. I’m not prepared however to give up feeding my baby, just yet anyway. In the last 8 weeks I have had the odd glimmer of time when I don’t feel wet-a few hours to a full day, but there’s no pattern.
    I’m just grasping at straws.
    Does anyone know if there is a specialist in Ireland that deals with PN?
    I’m going to ask for an MRI at my appointment on Tues, as I feel 10 months pp with unexplained symptoms isn’t good enough.
    Hoping for some gems of info/advice.
    I’m just so sad. I want to feel normal again, like all my friends who’ve had babies. 😕

    • Pelvic Guru December 13, 2015 at 9:54 am - Reply

      Sorry you are dealing with this. A few more questions. We obviously can’t give direct medical advice, but can help guide with more info and questions. 1. Are you actually wet there or it just gives you the sensation? There are pads that turn a color of it is urine leaking vs just discharge. You may not have a prolapse, but there may be a small tear or issue at the urethra. 2) has anyone offered a topical hormonal cream (such as estrogen) or even coconut oil? Even if a woman is a year out from having a baby, there can be major shifts in hormones locally at the vulvar and vaginal tissue that won’t show up on blood tests. The fact that you are still breast feeding means the hormones still may be fluctuating. There’s a lot to consider, but certainly there should be a way to get the right help!

      There’s so much more to consider and not just necessarily a pelvic floor tightness issue.
      Email: pelvicguru1@gmail.com so we can try to find people for you in your area. ~ Tracy Sher

  77. […] Pudendal Neuralgia – There is Hope! | Pelvic Guru – Who’s even heard of Pudendal Neuralgia? How about Pudendal Nerve Entrapment? (** Added 2/27/15 Please also read the newest blog: 5 Things We Wish You Knew About … […]

  78. […] Pudendal Neuralgia – There is Hope! | Pelvic Guru – Who’s even heard of Pudendal Neuralgia? How about Pudendal Nerve Entrapment? (** Added 2/27/15 Please also read the newest blog: 5 Things We Wish You Knew About … […]

  79. Martha December 25, 2015 at 1:07 pm - Reply

    Hello to all,

    In November of this year I started to feel discomfort on the left side of my lady part. I got tested for uti came out negative. I saw my gynocologist and everything was normal. Recently I saw a neurologist who did two mris. One was on my lumber spine. The other on the sacral region and pelvic area. Everything came out normal.

    I have been dealing with these sensations for over a month. It has gotten a little better but I’m not 100 percent normal yet. I feel like a burning running sensation. Just on my left side of lady part. Primarily when I’m sitting.

    The neurologist thinks it could be a pinched nerve that may be small that the mri did not capture. He told me to drink b complex and see him in 6 weeks.

    I am frustrated because I want to know what is causing this. I don’t know if I am dealing with a pudendal issue. I don’t know what to do.

    I am from miami Florida and I don’t think there are specialist here for this. Can someone help?

    • Pelvic Guru December 25, 2015 at 1:10 pm - Reply

      This can be a very easy thing to treat. A great place to start is with a pelvic PT. Pam Downey and Beth Harris are both in South Florida and can help you. I don’t have their info handy right now but you can email info@sherpelvic.com if you need further assistance. There’s help for you!!

      • Martha December 25, 2015 at 1:14 pm - Reply

        Thank you so much for the reply! You have no idea how much this means to me. I have been reading online the stories of people with pudendal issue who have not been able to find treatments or help. I think that is my main fear that I may not getter better or find an answer. 😢

        • Pelvic Guru December 25, 2015 at 1:18 pm - Reply

          Sher Pelvic is up in Orlando if you need further help. I treat these symptoms regularly. Don’t worry. The tough part is that there isn’t a diagnostic test for this… So, some try to tell you it isn’t there. Of course it an issue. Of course it is real. All the best!

      • Martha December 25, 2015 at 1:16 pm - Reply

        Thank you so much for the reply! You have no idea how much this means to me. I have been reading online the stories of people with pudendal issue who have not been able to find treatments or help. I think that is my main fear that I may not getter better or find an answer. My case is not as severe as others that I have read but it is frustrating from feeling normal to all of the sudden these sensations come from nowhere. It all started happening after a dance performance. 1 day after the show all these oddysey started. 😢

        • Pelvic Guru December 25, 2015 at 1:20 pm - Reply

          And one more thing… Make sure the PTs check your bulbocavernosus muscle on that side. The dorsal or perineal branches of the Pudendal sometimes get compressed there. Easy to treat.

    • Anonymous December 26, 2015 at 4:12 am - Reply

      Hi i know you had your MRI of the sacrum etc ,BUT did it include the coccyx ??? it usually doesn’t , i had 3 and none included the coccyx . Even a dynamic x-ray of the coccyx . The reason is the a partial attachment of the S.S. and S.T ligaments on to the coccyx . It is usually over looked but it is so important for a proper check .

      • Anonymous December 26, 2015 at 10:03 am - Reply

        I don’t think it included the coccyx. I would need to find out.

        • Pelvic Guru December 26, 2015 at 10:05 am - Reply

          In 16 years of working in pelvic health, I rarely see anything in X-rays or MRIs that shows an issue at the coccyx or associated ligaments (even when there is an issue there). But, it certainly isn’t a bad idea to screen that area just in case.

          • Anonymous December 26, 2015 at 6:34 pm

            Hi Pelvic Guru the reason why i say , to check and include the coccyx is for 6 year every specialist left it out and every therapist did as well , until one day i saw a therapist who did some tests and found that there was so torsion in the sacrum , that he said there is something wrong ,He told me to get a x-ray of the coccyx and sacrum so i did and we found that the coccyx was dislocated and deviated to one side .As i said i had 3 MRIs done buy different experts ,not one had included the coccyx not any therapist thought to even look .
            [ the coccyx is regarded as a different part of the body it is not part of the Lubo sacral part , that came from a radiologist , even my GP didn’t know he thought the coccyx was part of the sacrum the reason why it is regarded as a different part of the body is time and money$$$$ getting a MRI ] I have asked a number doctors and therapists since all thought the coccyx was part of the sacrum ,BUT NOT in a lumbo sacral MRI.
            As i said you have the S.S. and S.T. ligaments have a partial attachment to the coccyx and the P.N. goes between the S.S. and S.T. ligaments , with the the deviation you pull those ligaments tighter on one side and compress the P.N.
            Now this can occur if you have fibrous tissue occurring on any of those two ligaments .
            Remember the pelvis is complete package , so it is important to look at everything , when you start saying this or that is not important you start to leave things out in diagnosing .
            This is what over a dozen specialist doctors had done even the countless therapists .
            Every Doctor and every therapist keeps learning , it is a never ending process . We are all unique and we all don’t fit in the same pigeon hole . The pelvis is so complex and finding a strait forward answer is not always the case .
            Thanks

          • Pelvic Guru December 26, 2015 at 7:35 pm

            Of course. We often don’t see that on MRI or X-ray. Or we can just palpate and treat it without an X-ray. I can tell when someone is deviated. But… Can’t hurt to look there, for sure. The sacrococcygeal region gets missed a lot. Thanks so much for sharing your experience and details. Always good to learn from real cases.

          • Martha December 26, 2015 at 8:16 pm

            I will be contacting the pt that you suggested near my home area. I hope my case is just a compressed muscle. I did notice when i went out to walk today the lower part of my left buttock was tingling. I did stretch before and after. The joys of these sensations! Lol

  80. Antoinette December 26, 2015 at 1:28 pm - Reply

    Hi

    I have been getting treatment in New York City with superficial trigger point injections and pelvic floor physical therapy . I started to see results but one day I woke up and I started having excruciating pain with burning inside the pelvic floor sit bones legs and I am not sure why you got to that point . I know My Mri shows scaring of the PN, for some reason the burning is not subsiding. I was hoping you can lead me on which way to go, I am a little confused about all these injections that they do have out there for PN at Rochester clinic, Dr. Conway New Hampshire or Dr. hibner in Arizona. Or do I just go to a pain management and they do also some kind of trigger point shots which I think is different than the superficial shots IV guided. So my question is If the Mrn shows scaring on the pudendal nerve, and the superficial trigger point injections I get which consist of marcraine/lidocaine and steroid injections, which at times I get relief for three hours at most, what do I do next? Do I do other kinds of shots, this is way to confusing. thank you for all your help

    • Pelvic Guru December 26, 2015 at 1:36 pm - Reply

      There’s a very long answer to this, but here is a highlight for now: 1. “Trigger points” can just be the effect from an underlying cause. This is why you may feel better for a little, but then the pain returns 2. There’s now way to truly know is that is definitely scar tissue in an MRI and even if it is, it may not even be the source of your issues. Even if it is a Potter MRI. So many cases of sure heroes show that what was thought to be scar tissue turned out not to be; and some people do have scar tissue on Pudendal nerve and MRI didn’t show it. It is similar to MRIs and endometriosis – it doesn’t show up on there.
      So… I know this all seems overwhelming and not helpful. The most important thing is to continue to investigate if there is an underlying cause for this issue. There are guided blocks and trigger point injections. Sometimes they are done together under Anesthesia and other times separate. The people who find the most relief are those that have a distinct local nerve or tissue issue (and this relief, as you stated, can last only hours or a few weeks). I’ll try to share more, as it IS confusing and the answer is different for each person.

      • Martha January 9, 2016 at 7:55 pm - Reply

        Hi Tracy,

        I had my evaluation with a pelvic therapist and she was not able to confirm it was pudendal. However when she performed the internal examination I felt some pain in the (levatator ani iliococygeus coccygenoy. She also said pelvis bone/hip bone are a little assymetrcal. Could those pelvic muscles be causing my burning/tingling?

        • Pelvic Guru January 9, 2016 at 7:57 pm - Reply

          Yes… They certainly can be causing burning via muscle compression on the nerves… But, there are also so many other reasons for it… So, make sure you are getting comprehensive care. It definitely makes sense to address the musculoskeletal part as one of the primary treatments

          • Martha January 9, 2016 at 8:03 pm

            What involves comprehensive care? just so I have an idea when I start treatment next week. This is the first time I meet this pt. She seems knowledgeable and told sme she had treated patients with my symptoms. Thank you for the response! I am feeling anxious. Have been Dealing with this for almost 2 months. Hopefully I respond well to treatment.

          • Pelvic Guru January 9, 2016 at 8:05 pm

            Comprehensive – things to discuss with the PT- things you can do at home, do you need any other meds/hormone support/GYN consult, pain management support /reading materials, etc.

  81. Julie January 10, 2016 at 6:37 pm - Reply

    My husband is in horrible horrible pain and he is going to have a heart attack if pain persist. We are going on for a year now doctors won’t help him no insurance. What can we do its pudendal nerve pain and I think it is coming from lifting heavy objects.

    • Pelvic Guru January 12, 2016 at 11:32 am - Reply

      First thing is to find anything that even drops the pain down and do more of that. If anything aggravates it, he must stop for now. The nerves get irritated and need to have decreased irritation. Where are you located?

  82. Susan January 12, 2016 at 9:10 am - Reply

    I have had 12 surgeries to remove trans vaginal mesh and now am left with PN. I cannot sit, or exercise, I have tried numerous trans vaginal botox injections, nerve ablations, nerve blocks, trigger point injections, opiate pain meds, gabapentin, vaginal suppositories, rectal suppositories…. is there anyone in Michigan who is an expert in this field? someone who can help me with the pain.

    • Pelvic Guru January 12, 2016 at 11:33 am - Reply

      University of Michigan had a pelvic pain program with some good docs. I’ll see who else I can find. What area?

    • Antoinette January 12, 2016 at 1:33 pm - Reply

      Rfa help at all? Nerve abblation I think it’s called

    • Mary January 12, 2016 at 10:49 pm - Reply

      Hi! Try going to PudendalHope.info. They have a good portion of the doctors who work with PNE on there.

  83. […] Pudendal Neuralgia – There is Hope! | Pelvic Guru – There is hope a new discovery has been made for people suffering with PN in the British Journal of Urology International. http://www.bjui.org/ContentFullItem.aspx?id … […]

  84. laura ferrin-picun February 1, 2016 at 6:01 pm - Reply

    I was diagnosed with Pudendal entrapment a couple of year ago after having severe intercourse pain . I was treated with local inyección out side pudendal area and inside the vagina. I was taken Gabapertin (anti convulsant ).. and unfortunately nothing works. I feel hopeless, as about to loose my marriage . I live in Hollywood Florida and can’t find any doctor in my area , close to or within the state. Somebody help me please.

    • Pelvic Guru February 1, 2016 at 6:02 pm - Reply

      Jose Carugno, GYN at University of Miami and Beth Harris pelvic PT at Boca Regional; or Pamela pelvic PT Downey in Miami.

    • MM February 1, 2016 at 6:49 pm - Reply

      Hi Laura

      I’m from miami and have started pelvic physical therapy. Started in Jan and I am just starting to see some improvements. Definately give physical therapy a shot. We are all on this together!

    • Martha February 25, 2016 at 9:40 am - Reply

      Hi Laura,

      Have you seen the PT or the doctor recommended by Tracy? I will be seeing him next month. I was doing improvement with my physical therapy. However, I think I aggravated something and feel like how I did in the beginning. Like my pt says you will have your ups and downs. Important thing is to stay positive and keep trying.

  85. Mary Strong-Spaid February 12, 2016 at 11:53 am - Reply

    We are moving to Texas and we live in Virginia. I have pudendal nerve pain and have difficulty sitting in a vibrating car. I just bought a “Twin Cheeks Cushion” from the company: Cushion Your Assets. It helps, but I still don’t know how far I can get, even with this. My daughter suggested shipping the car and riding a train. But I don’t know if that would be worse or not. I can get out of the car….I wouldn’t be able to get off a train. AND I think a train vibrates more than a car? Same things with planes. A plane vibrates horribly while taking off and landing and sometimes with turbulence on the way. During those times, NO ONE is allowed to take off their seatbelt or get up. Last time I rode on a plane, I was begging the flight attendant for ice and then sitting on the ice trying to freeze the pain. She told me that I shouldn’t come back on a plane without some strong pain killers. Yes but…pain killers don’t really work. Medicines like “Tramadol’ cause urinary hesitancy and constipation, which makes matters worse. I don’t have incontinence, I have the reverse.. When the pain is severe, everything ‘locks up.’ I plan to drive my own car to Texas, so no one else will be riding with me. I do not like to stress other people out or beg them to please find a place to stop (often). No one really understands. When I need to stop and get out, I NEED to stop and get out. Auuugh. I don’t know what’s going to happen. But I have to get to Texas, one way or the other. It’s about 22 hours away. Does anyone else out there with this problem have suggestions? The car gives me the greatest control, but would take the longest.

  86. rmm February 16, 2016 at 3:02 pm - Reply

    I recently had surgery to alleviate pudendal nerve damage symptoms. L3 ,4 & 5 were fused . 2 months later and 5 weeks of therapy, I have no improvement at all and my foot and leg is becoming completely numb worsening by the day. Does pudendal nerve problems also cause leg pain and numbness as I have described?

    • Pelvic Guru February 16, 2016 at 4:07 pm - Reply

      Those symptoms are not typically caused by the Pudendal nerve. But, there are many nerves in that region (for example – sciatic nerve does go to the leg and can have those symptoms from local compression or at L5/S1). Sorry you are still dealing with it. Continue to seek assessments and help.

  87. P March 12, 2016 at 12:06 pm - Reply

    I understand the difficulty of this nerve issue and my husband has been doctoring since 2008 with extreme ranges of pain. We have done physical therapy, chiropractic, facet shots, epidurals and finally transplanted neurostimulator with no relief. He is close to the end of his rope with dealing with constant pain on a daily basis. Any direction you can give would be wonderful!

  88. Nik May 3, 2016 at 7:20 pm - Reply

    I have pudendal nerve issues but without pain. I have the sensation I need to urinate 24/7! While I am so grateful to not be in pain, this is driving me mad. I have had all the gynecological and urology tests with normal results. I am now on Gabapentin and it works mostly. I also see a pelvic floor PT. This helps too. But I have dealt with this for a year and a half and it has not gone away. Just turned on one day and won’t turn off. Any suggestions are much appreciated!

  89. Anonymous May 4, 2016 at 12:46 pm - Reply

    I have had similar sensations and other sensations that are far worse and have found that gabapentine works best for me.

  90. Tom green May 17, 2016 at 4:50 pm - Reply

    I have it and when I get the nerve block it helps!

  91. Tracey Ifield June 10, 2016 at 6:11 am - Reply

    Hi people, I have been told that i have pudendal neuralgia. Just yesterday had a nerve block to check if that was it. the dr told me that it would take around 30mins to work, but the pain is still there 24hrs later. i feel like i am going crazy with this pain!!! i have now had it for over 12 months and initially had taken pain killers to try and relieve the pain but i went off them as they made no difference other than to make me feel dopey. Any advice or help would be appreciated. Stop me going crazy haha

  92. Francisco Barrios June 21, 2016 at 8:40 am - Reply

    What about damage due cycling, is any hope??

    • Pelvic Guru June 21, 2016 at 8:42 am - Reply

      Yes. The first step is to stop cycling (for now) and find those that can facilitate healing.

      • aussiem June 21, 2016 at 9:35 pm - Reply

        i agree stop cycling and get some good butt massaging especially around your sit bones [ischial tuberosity ] and sacrum and along the ST and SS ligaments .

  93. aussiem June 21, 2016 at 9:44 pm - Reply

    Also look at a sit / stand x-ray of coccyx [dynamic x-ray of coccyx ] to check if any deviation is occurring , as the SS and ST ligaments have a partial attachment to the coccyx , if any one side is in spasm then they will pull and with the pudendal nerve going between the two ligaments it can compress ???? food for thought .

  94. Dr B K Bandre June 30, 2016 at 11:26 am - Reply

    I am suffering. from. this problem but. I can manage with yoga practices but some times when si . In car trouble ncreases It was not |closed by urologist but I did with the help of internet I was treated for e coli forming in rtf kidney

    • steve tim July 12, 2016 at 9:02 am - Reply

      This publication contains information about medications used to treat the health condition( Chronic Pains, mental condition, Anxiety, Depression, insomia diseases). When this publication was developed, we included the most up-to-date (accurate) information available. Occasionally, new information on medication is released.

      For updates and for any questions about any medications you are taking, please contact
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