April 2021 update: Since writing this post back in June 2013 I’ve had the pleasure of cyber meeting Dr Susie Gronski who specialises in male pelvic pain. Dr Susie and I had a great chat about all things male pelvic pain which members can watch here. You can get help online with Dr Susie via her website: drsusieg.com
As many readers to the site will know I don’t encourage contact. I simply can’t maintain it, and most certainly most times I have had contact I can’t help but be drawn back into the dreaded sitting and typing position through feelings of compassion, empathy, or to communicate a new perspective or treatment in the hope of helping others with Pudendal Neuralgia (PN). Barry’s story, I felt was important to add to the site.
Most women with PN have felt lost at some point but as time goes on and word spreads, I believe treatment and understanding is more widely found for women. I’m not so sure for males though. I’ve had a few males battling PN contact me, and although they’re not in Barry’s end of the world I felt this email had to be shared.
Barry it’s been a pleasure to cyber meet you. Thank you for allowing me to share your story and thank you for alerting me to How do I know if I have PN or PNE?
Hi Soula,
Thank you so much for your kind response. If I remember you are not in the US . Either way I do understand the not wanting to talk. It seems most of my friends have disappeared. I know this is because people don’t want to be reminded about or hear about bad news or pain. Kind of a shame when you need love and support, just like in a divorce, it’s not there.
I have a wonderful 2nd wife now 18 years and without her I’d be gone. I use Facebook only to see some family pictures from Florida (my wifes family) I’ve lived here in Delaware since December 2011 and have not had a block since. I already had 6 Pudendal Nerve blocks and this after so many other procedures: 5 Ganglion Blocks, 6 Caudal Blocks, 2 Botox injections, 2 Radio Frequency Ablations, 2 Neurostimulator Trials, an Interstim Impant, and then the 6 Pudendal Nerve blocks.
Endless research and finally putting the right two words together on Google, opened up the world of Pudendal Neuralgia (Neuropathy) to us. That was near the end of December 2010. On the day after New Years and in response to two letters I sent to two Dr’s names I had found, I got calls from both Dr’s the same day.
The first one was supposed to be a well-known Neurosurgeon who claims to have been on Oprah and Dr Oz TV shows. He was once affiliated with Johns Hopkins. Here is where it gets bizarre. He told me that I definitely had PN and I needed to get the Pudendal Nerve Entrapment surgery immediately. With further discussion I learned that he was not on our Blue Cross Health Plan or any Insurance. Then I asked him how many he had done and he replied that he has done extensive research. Further chat revealed that all of his experience was on cadavers. I decided not to be his first live patient. This was so bizarre.
The 2nd, Dr Mark Conway from New Hampshire had been in France working with the Doctor there who pioneered the surgery. He was very compassionate and told me I’d need to have some testing at his office in New Hampshire. I had also contacted Dr. Stanley Antolak in Minnesota. He was much further away and Minnesota in the wintertime is brutal. He also had a whole network set up including a Physical Therapist, which for men there are basically none. This seems to be more prevalent in women.My wife and I flew to Manchester New Hampshire. Dr Conway was actually an OB-GYN and man was that a weird feeling. When I saw him I asked how many of his patients were men and he replied about 40% from all over the US. He did some testing and diagnosed Pudendal Neuralgia. The same day, he arranged for me to have my 1st Pudendal Nerve block with Dr. Jorge Quesada at Eliot Hospital in Manchester, New Hampshire. We flew back to Maryland the next day. The block lasted about a month, so off I flew to New Hampshire again. In all I hit New Hampshire three times.
On December 2nd, 2011 I was scheduled for a full knee replacement in Delaware, and I was still in agony. There was no way I could do it and I could not get a flight to New Hampshire due to Thanksgiving and no seats available. Feeling helpless and being unable to walk, I had just about given up hope when a small miracle happened. A young lady (actually a Nurse in Virginia) I had been in contact with sent me an email with the name of Dr. Christian Muller, a radiologist that ran a pain clinic in Fairfax Virginia. I called his office and learned that he would do the Pudendal Nerve block. They got me in the day after Thanksgiving and he was a wonderful man. Although he does not believe in the Pudendal Neuralgia diagnosis (he keeps telling me it Non- Bacterial Prostatitis), he did the Pudendal block with a CAT scan for more accurate needle placement. This proved to be the best block yet. It got me thru the knee replacement and Physical Therapy and lasted about 6 months. Since then I’ve had the 5th and 6th Pudendal Nerve blocks with him. Now I have moved to Delaware and there is no one anywhere nearby, even in Philadelphia that will do this block. Dr Muller is a three hour drive, and as I said sitting is the hardest part.
Then I heard about the contaminated Nerve Block medicines that were in Massachusetts and that people were dying even a husband and wife, who had blocks the same day died. I think there had been mold growth in the medicine, and these people died very quickly. This combined with a very cracking lower spine from all these procedures, has me scared and on hold for now. I am somewhat improved, but I need the other knee done. In addition I will need the Interstim battery replaced in about a year, and there again is no one near here that can do it. It was implanted at George Washington Hospital’s Hospitals Pelvic Floor Center in Washington, DC – also a three hour plus ride and with no parking and no place to stay for the follow-up. In addition I have four kidney stones two on each side.If you have gotten this far in this long email, I thank you for that. The frustration of being male, having few Doctors that believe in the diagnosis, and the inability to find a Physical Therapist that will work on a man, has left me with incomplete treatment and knowing there is no real cure. My family (other than wife) are not helpful as my brother constantly reminds me that at least it’s not cancer. I’m in my late 50’s and he is a 62-year-old Attorney with very few health issues.
I continue to hang in there. I am on Social Security Disability, and don’t get out much. My wife who is older is patient with me, but she has her own issues and recently retired. We sold our house in Maryland for a very low price and moved here to Delaware to what was a vacation type home. We love living here but finding Doctors is a huge problem.Again, thanks for your time, and if there is ever anything I can do for you, please contact me.
Warm Regards
Barry
I had Dr Conway perform bilateral transgluteal pudendal nerve decompression surgery on 11/12/13 after years of debilitating pain and numerous doctors telling me to seek mental health help and like another fella that it was non bacterial prostatitis. It’s been almost 11 years and I have mixed feelings and often wonder if I made the right decision. I now have severe sacral instability due to severing and cauterizing of two ligaments. At first every orthopedic I sought out couldn’t believe a doctor would severe and cauterize those ligaments and tell me there is nothing that can be done so I’m left with severe instability in my hips and sacrum and have continuous leg tightness with my hamstrings tearing away from the insertion points. Not sure what my options are but I’m 50 and have had the last 10 years taken away from me .
What a terrible time you’ve had.
I would highly recommend Dr Echenberg (Echenberg Institute)or Evelyn Hecht who also has virtual Pelvic PT (www.emhphysicaltherapy.com).
Evelyn also has the online home program of PelvicSense (in the sidebar).
Also check Dr Susie Gronski as she specialises in male pelvic health.
Hope this helps.
Soula
Hey everyone. I am suffering right now. I have pain or what feels like an extreme tightness in my Perinium. I get twitches or quivers in my thighs and down my legs. My toes get a numb-tingling like sensation. This is mostly on my right side. The right side of my face is extremely tight and aches constantly with my jaw sometimes popping on it’s on from the tension. My lower abdomen is tight and has nerve-like pain all around it. And my penis and testicles are constantly feeling like they are aching and having a nerve reaction so they’re always twitching. This is going on 24/7 now and I am extremely depressed and don’t work much anymore. I’ve been to the neurologist and just had a mri of my brain and complete spine. I see him in a week and hope I have some answers but based off of what I’ve read this isn’t an easy thing to diagnose for most people. If anyone reads this and has dealt with the same thing please contact me dannykalei8@gmail.com
I have pudendal nerve blockage. I live in Las Vegas NV. I’ve had an injury which caused this issue. I lost my job had to get public assistance got medicaid but not many doctors take my insurance….. Been misdiagnosed for so many years I feel it’s getting worse… Please help
Hi guys– please consider going to physical therapy. I’m a 24-year-old male with pudendal neuralgia or pudendal nerve entrapment or whatever, but I can’t recommend PT enough. I was misdiagnosed, bounced around from doctor to doctor for three years, and was generally a pretty miserable person until six months ago. My symptoms are consistently 50-75% better, which means I’m able to sit, walk, and be functional. If you are near NYC, go to 5-point physical therapy, or ask them to recommend somewhere to you. I wish I had known about this so many years ago, so I hope it helps anyone who’s suffering from this weird problem like I am/was! No joke, I was taking three baths a day, my relationships were falling apart, it was a living hell. Now I spend most of my time being normal person! Good luck out there, I’m glad the internet exists so we can figure this out together…
Hi everyone! Will here, three years later. I’m 100 percent better now. While the physical therapy helped, in the end it wasn’t the answer. She recommended that I work on my diet, and start taking supplements to make sure I wasn’t constipated. This didn’t sound that important to me, but it completely worked. I took a combination of magnesium, probiotics, and psillium powder. Within about 5 weeks, my symptoms were improving, and in a couple of months they were gone. If I don’t pay attention to my diet and I sit a lot they return a bit, but this simple answer did the trick for me.
Hi will, can we please get in touch. Regards, George
This is so brilliant Will. And it just goes to show that PT’s really do alot of work and are so underestimated and undervalued. It was a PT who diagnosed me and set me on my path. I’m so happy for you and I’m so grateful you came back to post here and let everyone know that it’s possible to manage this issue and manage it very well.
Fly, fly!!
Hello Will!
I’m pretty close to your age – 29 years old – and was misdiagnosed for 10 years with Peyronies and Prostitus. Things got really bad about 7 months ago until I was officially diagnosed with PN by Dr. Antolak. I’ve been on gabapention for 7 months, have had 4 steroid injections, stand at work, and have a pretty good diet. I’m about to start physical therapy next week for the first time. Dr. Antolak is convinced I might have PNE but I’m not so sure. I think it’s PN caused by straining and a stretch injury. Anyway, I know this might seem weird, but is it okay if I email you and ask you some questions about your PT experience? I haven’t done PT yet, and I’ve improved with gabapentin and the 4 injections, but not as much as I would like to, so I’m excited to see if PT can help me. I would really appreciate your time. Thank you!
Sure! My email is wdhealy@gmail.com.
Thanks! I just sent you an email a little while ago. Should be from Matt S. – not Mark. Thank you!
Thank you!! I sent you an email a little while ago. It’s from Matt S. – not Mark. Sorry about that!
Hi Matt S, what is your email can we please get in touch? I’m 22 and facing similar issues.
I believe I have this issue it’s horrible can’t sit. Still hurts a little when standing and laying down. Pain in lower spine, left testicle with a pulling feeling on spermatic cords in abdomen. Pain also in left bum cheek near the anus and in the middle of the bum cheek… This pain came about after sitting in a chair watching tv for a few days after an operation for removal of wisdom teeth …I’m 24 I just married to my beautiful wife and now I have this my life is now ruined
Andrew, my heart goes out to you and I feel(know ) your pain. Are you in the US or Australia?
My pain in the anal sphincter was brutal and I was near suicide. There is help out there. Let me know if you are in the USA. If so, where and lets work to find you help. if you are in Australia, Soula’s site is an amazing wealth of knowledge and could very well help direct you to someone that can help you. The longer you wait, the more potential nerve damage. Seek help now, and if I can somehow help I most certainly will. Trust me, not being able to sit, yet travelling a long distance for help, was a huge challenge, but I’d do it again in a heartbeat. Hopefully your new wife understands the look of severe pain on your face, and can help research this with you. It always amazes me which Dr’s know about the Pudendal Nerve and which do not. Example: my Oral Surgeon knew about it, but the head of the Pelvic Floor Center at GW University Hospital in DC( a very prominent Urologist) knew nothing about the Pudendal Nerve. Odd, as it is Anatomy. Please let me know where you are,so I can possibly help you. My email is: barrysegel@comcast.net
Barry I have not had the chance to respond to your wonderful comments on my site. I’m so glad to hear you’re managing although the knee ops were the last thing you needed. So great to hear you spreading hope to others also. It’s difficult, as you know first hand, when you’re in this pain to believe there is a solution. Andrew there is! And since it’s very early days for you it’s most likely the issue will resolve. But just get onto it, avoid sitting that’s for sure. Anything that brings on the pain would be best not done. I feel my issue wound itself up and up into a monster because I kept sitting, kept working… Still, I managed to improve greatly, more than anyone ever thought I would but you just can’t poke this pain. It’s not one to be brave with or to push through. It needs rest in the pained area. Lots of it. And then slow pace up.
Soula, it is my pleasure and now mission in life to help others. Although your site was found by me later on, I whole heartedly applaud you and your tremendous efforts and success. I speak of you to my wife Sheryl, as my friend in Australia. I was thrilled to be included in your site and am more then happy to help those here in America. My spine surgeries, one was totally successful, the 2nd-Cervical Fusion- the cards are still out. We think there is a Rotator cuff issue,but have to wait to heal from this. One thing we both learned is the huge challenge of living with chronic pain. God bless you and your husband, and if you ever travel to the USA, there will always be a place for you here in Lewes,DE- the first town in the first state, and near the beach. We love living here, even with the challenge of the summer traffic. Warmest regards! Barry
Did your pudendal injury get fixed?
I know of 2 doctors who will do PN blocks in Philadelphia. There are also 2 famous specialists in bladder and pelvic pain in Philly: Dr. Kristene Whitmore at Drexel and Dr. Philip Hanno at Penn. They see both men and women. Email me for more info.
Sophie, Thank you for the info. I have been much improved but not cured. Unfortunately I was recently diagnosed with a weird type of Osteo Arthritis called DISH, which causes extra bone to grow as spurs that surround ligaments and tendons. Since Feb 20th 2014 I have had Lumbar and Cervical Fusion surgeries.
I continue to stay positive and encourage everyone to be their own advocates. Please feel free to contact me. We went to Philly for a consult on the Lumbar Fusion, but had it done locally in Lewes,DE, and with fantastic results.
Thanks, and regards,
Barry
Hi, Barry. I have a brother with what we believe is PNE (he recently had a Pudendal nerve motor latency test which showed an abnormal nerve and has the exact symptoms of entrapment after a surfing accident). We are now trying like hell to find a doc that will do a CT guided block on him to get some relief. The problem is, he’s had this horrific pain for 9 years and now has depression related to it and does not work- therefore no insurance. He does have medicaid, but of course the doctors that treat this issue are few and far between and if they are out of state they typically do not take medicaid. Very frustrating. I am wondering if you have looked into the surgery if these blocks work so well for you. It seems the fact that the blocks work is a positive diagnosis of nerve entrapment. Not sure if you have heard of Dr. Hibbner in Pheonix, but I think he is a great option for surgery. Of course for us, he won’t take medicaid and we can’t afford the procedure. Anyway, I wish you luck on your journey and thanks for the info, we may contact that pain doc in VA to see if he might work with us on a CT guided block.
Best,
Bonnie
Did your brother get help?