Success Stories
David’s Story
When I was 57, my battle with pudendal neuralgia began as an itching/burning sensation that, within 2 months, reached a pain level of 6 to 8 (on a scale of 1 to 10) every day. Over the course of 7 months, I saw 12 doctors, none of whom knew what was causing the pain. They prescribed a series of pain killers, muscle relaxants and injections which did not provide any relief. The 13th doctor diagnosed it as an entrapped pudendal nerve which led to nerve blocks, physical therapy, acupuncture, numerous medications and bi-lateral pudendal nerve release surgery. Nine months after the surgery, I was continuing to have severe pain when I herniated a disk which lodged in my spinal column and caused excruciating pain in the sciatic nerve in my left leg. After surgery to remove the disk the sciatic pain went away but I was still feeling pudendal nerve pain.
I finally found a doctor who was thoroughly familiar with pudendal neuralgia. He was the 26th healthcare provider by whom I was treated. He prescribed significant lifestyle changes such as avoiding strenuous exercise, avoiding sitting and using a custom cushion whenever sitting was necessary, along with some nerve medications. Within a few weeks, my condition began to improve and within 2 years, I was free of pain. That was 8 years ago and I am down to one medication and can engage in most activities. I can jog, garden, perform household chores and even sit during a 5-hour flight (as long as I use my cushion).
The lesson to be learned is that pudendal neuralgia is not something that is easily diagnosed or cured. However, with the right doctor and treatments, you may be able to resume a relatively normal life and you can tame the constant pain. Be persistent! It took me a total of 31 healthcare providers and over two dozen medications to regain my life, but it can be done. Also, in the last 8 years, more healthcare providers are familiar with pudendal neuralgia and there are new treatments that did not exist when I started my journey. Don’t give up hope!
Keith’s Story
Keith had felt “come and go” testicular twinges for 15 years prior to his sudden and full-blown onset in July, 2010. After this sudden onset, with constant pain in his pelvic region, and made worse from sitting, Keith had many tests, saw many doctors, and took many meds with no resolution. Keith realized that excessive sitting due to him being in a corporate/business role, constantly made his life difficult and very painful. Keith found it tough to hide the pain from his family and his young kids, and felt scared all the time, wondering if he would ever get better.
Keith spent many days and nights with ice packs pressed against his genitals. He often used the bath to help soothe the muscles, stress, and deal with his poor quality of life. Keith slowly became depressed and almost lost hope at the thought of a constant, undiagnosed pelvic pain after two years. Keith found a promising solution after having consultations with his special doctors who are familiar with Pudendal Neuralgia. This is often described as a “rule-out condition.” He is grateful to find Drs. Marvel and Conway and Richard who he credits helping him. Keith now lives a normal quality of life, with exception of occasional “flare-ups.”
Keith credits these five attributes with helping him get better. Five CT guided, nerve blocks. Using a special cushion every time he sat for many years and still using it on certain chairs. Taking a tricyclic antidepressant – a progressive high dose, then on-going “maintenance.” Being mindful of his body and adjusting his lifestyle. Taking an antidepressant which helped many factors, including pain, anxiety, and nerve-pain efficacy.
Keith is living his life now doing many activities he enjoys. He does landscaping/gardening, hiking, walking, golf, painting, and even began running and has completed a number of half marathons and is currently training for a marathon. The one activity he eliminated was mountain biking.
Michael’s story
On December 18, 2021, I climbed out of the Grand Canyon on one of the old abandoned trails. About an hour into the drive home to Kanab, Utah, where my wife and I winter, I started getting burning pain in the perineum, followed by pain when urinating. Since I’d had a prostate surgery about six weeks earlier, I thought I’d gotten an infection, and the local ER diagnosed it as such, too.
Thus began a frustrating journey with many false paths and dead ends. I went through several doctors and urologists, who made diagnoses ranging from referred prostate pain to chronic prostatitis to yeast infections. Over the next four months, I had two endoscopies, five cultures (all negative), and seventy days of three different antibiotics! None of the antibiotics helped.
Over a month, the burning increased and spread from the perineum to the genitals, making life almost unbearable. It burned during day and at night. When we left Kanab to drive north to Montana in the spring, it about drove me crazy sitting in the pickup for 825 miles.
Back in Montana, my local urologist was the one that classed it as chronic prostatitis, and then cut me loose. I was reassigned to one of his partners, and the more I learned about chronic prostatitis, the more hopeless it seemed. I suffered from depression and entertained suicidal thoughts. I suggested to my wife that maybe we should separate, rather than her living with a “disabled” husband. She wouldn’t consider it. To help with the depression issue, my general physician prescribed Duloxitine (Cymbalta) for both pain and the mental aspect. She also prescribed oxycodone, which I only used very sparingly. My wife insisted I see a counselor, too.
During this time, by reading articles on the Internet, I came across “Pudendal neuralgia.” None of the doctors had ever mentioned it to me, and the more I read, the more I was convinced that this was what was afflicting me. I was actually relieved it might not be chronic prostatitis.
I read about Pelvic Floor physical therapy, and to my surprise, being in Missoula, Montana, there was a group of several young women PT’s who specialized in pelvic floor issues. I got an appointment, and had urology make a referral and send over my records. Unbelievably, they were even in the same building as the PT’s!! When I arrived at my first appointment, the therapist looked up from my records and said, “I think you have Pudendal neuralgia.” She did an external and internal exam, finding I had a very tight pelvic floor along with many other tight muscles. She felt getting PN had been building for years, and finally got me. In the next several months, I saw her twice a week, and she also got me going immediately on a home stretching program that I did twice a day, 30 minutes each. In addition, she had me purchase a wand, so I could do internal work at home, and showed me how to use it. That was in May, and I stopped keeping track after about 800 at home stretching sessions. Frankly, the pain kept me extremely dedicated. She cautioned me it would take time, but I started getting good days in about a month. There were always relapses, but one time I went four days straight pain free! I was also lined up to see a pain management doctor, and went through four sets of nerve / steroid blocks. Each one caused a flare, which would then settle down. But, looking back, I don’t think the blocks helped, but I was willing to try virtually anything. During this time, I set up a teleconference with Elizabeth Akincilar (PT) and she gave me more ideas of stretching to do both externally and internally..
Over time, the pain lessened and left the perineum. Pain free days sometimes became a week, or even more. The pain changed from intense burning to “irritation.” A little lidocaine cream could usually alleviate that. During the winter of 22-23, I was back to strenuous hiking and did several Grand Canyon backpack trips up to eight days in duration. Last June, I hit a stretch of pain free days that ran into September, with a minor return to sporadic irritation in the fall. Nonetheless, my life had returned to normal. I’m a very active 70 year old, and am doing a ton of Grand Canyon hiking this winter (2023-24). I still do stretching, but not as long or as often. I try to do it once a day now. I also have incorporated pelvic floor strengthening exercises prescribed by my PT. When I first started seeing the physical therapist, driving the twenty-five miles to her office about killed me. Last summer, a year later, I drove to NE Wisconsin and back (3000 miles) without any issues!
The Duloxitine (Cymbalta) has been good to me. Despite all of the Internet bashing, I’ve never had any side effects from it. I was on 60 mg for about a year and a half, but have reduced it to 30 mg this winter. It really eliminated my background hidden anxiety, which likely causes a tight pelvic floor. I like the way I feel on it, but I’ll probably phase it out eventually.
To sum up, I’m back to living the way I did before PN arrived. I’ll probably stretch and strengthen for the rest of my life, and that’s ok with me.
Nathan’s Story
2 years ago I started having issues with intimacy, I was a 30 year old very healthy male. I started suffering from erectile dysfunction and a painful tightness “golf ball” like feeling in my rectal-perineal area. During this time I was one of the head nurses on a Neurotrauma unit in a major hospital, my wife and I were planning our wedding and I was working towards my nurse practitioner degree in a very rigorous graduate program. This lead many providers I saw to believe I just was under a lot of stress and my pelvic floor had just become “tight.” So under that notion I did everything I could conservatively to attempt to relax my pelvic floor, multiple rounds of pelvic floor therapy, internal release, and deep breathing with pelvic stretches. Unfortunately my pain continued to worsen to the point where I would be in agony with sitting, pushing through it and my sex life became more non-existent. I realized at this point the majority of healthcare providers I was seeing were missing the mark and something was seriously wrong. I performed an entire literature review and became fairly confident that I not only had pudendal neuralgia, but I had a high suspicion that I may have pudendal nerve entrapment. Thank you NP school!
After doing extensive hours of research, I found a pudendal neuralgia expert who recommended I try pudendal nerve blocks to help diagnose the potential for pudendal nerve entrapment. I did, they were effective, but they only lasted several weeks and had no effect on my sexual or bowel dysfunction. After careful consideration and examinations, ruling out things left and right - I decided to go to New Hampshire with my wife and undergo a left-sided transgluteal pudendal nerve decompression surgery. I knew going in that there were no guarantees, but this was impacting my life significantly to the point I felt I had nothing to lose. I trusted my own knowledge, I trusted my surgeon and I took a leap of faith. Thankfully it paid off, the pudendal nerve decompression for me was successful. I am only 4 and a half months out from surgery - my sex life is back to normal, I am able to go to the bathroom without severe pain and I can sit for an hour or two without significant discomfort. The healing process takes up to 2 years for the nerve damage to fully heal. I had ligamentous entrapment of the pudendal nerve in two different places of my pelvis which was confirmed during surgery by visualization and intra-operative EMG testing. I had refused to live the rest of my life on medication and felt confident that there had to be a better option out there for me. I am so glad I decided to get this surgery, but I will warn that the recovery itself is quite difficult and would highly recommend that individuals consider that before they go through it. I also have continued to work on my healing through doing more pelvic floor therapy, pelvic floor stretches and scar tissue mobilization. I believe this strongly correlates as to why I had such a good outcome. I hope my story can motivate others that there is hope with condition and that you should never give up.
Tony’s Story
I was a Category 1 Cyclist. Then back in 2007 my right leg stopped working and I was diagnosed with exercise induced asthma. Then in 2012 I developed Pudendal Neuralgia and PGAD. Had Pudendal nerve blocks and a 9 1\2 hour Pudendal Nerve Decompression Surgery. Then one day after I fell over a box face first into another box I developed Sciatica. Had injections for that too. My symptoms would come and go. After digging a 150 French Drain my left arm went completely numb and my neck was on fire. Got an MRI and discovered I had a bruised spinal cord at C2. Had surgery and Titanium brackets installed. Almost immediately my ability to breathe drastically improved. Then my right leg came back and all my symptoms of everything else vanished, and my flexibility in my hips and pelvic floor improved.
Larry’s Story
After 23 years long distance biking (not competitive - just because we liked the open-air roads) on the original 10-speed, with a stone-cold hard brick for a seat (not like today's tapered seats and certainly not like the current road bikes where the seat is level to the handlebars) - one June day in 1999 it was like a massive thunderbolt went through my groin. Nerve pain that never let up - what I called 'suicidal nerve pain.' I couldn't sit, stand, sleep, work- nothing. The only time I ever got a moment of relief was when I sat on the toilet and my pelvic floor was allowed to fall thru - 10-level nerve pain. Two crushed pudendal nerves both damaged and frayed - surgery in France made it worse - above 10 which is otherworldly pain. In 2002 pain clinics in France admitted patients - in private rooms - 24-hour care. I had never heard of ketamine in 2002 - yet directly from surgery, I was admitted to Clinique Viaud in Nantes. Within 3 hours of the ketamine drip entering my veins, the nerve pain completely melted away. Even under the best of drug delivery circumstances (in my opinion -ketamine slow-drip protocol) when the IV was stopped after 7 days the pain came roaring back. The relief did not hold. Just to clarify – this is a slow drip protocol (drip – drip – drip) 24 hours each day for 5 – 7 days. This is May 2002 - however, I knew I had to be on to something because while under the drug's influence, I was completely out of pain. So, I went back to France for another week of inpatient ketamine therapy in July and again in October 2002. Each time the pain relief held a little longer when the IV was stopped but ultimately still came roaring back. Christmas 2003 I got a 2nd opinion in France and was told the nerves were still entrapped and forever damaged. They put me in St. Joseph's in Marseille for 10 days 24/7 round-the-clock ketamine - this time when the IV was removed the pain held at 7 -- soon after - in spring 2004 - pain dropped to 3 -- soon after that to zero - where it remains today - even though the nerves are still damaged. Ketamine strength is neuropathic pain. The drug has no half-life to speak of (2 1/2 hours in plasma) so it needs time to stay in the body to work - still, there are no guarantees. For me - it was literally a 'do' or 'die' situation. I had no choice. Fact is, hope and determination drove me. These are necessary attributes (hope and determination) to beat back this menace.
Dylanne’s Story
All my life I have had weird pain symptoms that I couldn’t really describe to my parents or doctors. When I was very young, I had the starting’s ofInterstitial cystitis (bladder inflammation disorder), and struggled with bladder pain after urination. I had other issues that people didn’t think much of when looked at individually but when looked at as a whole were attributed to EDS ( a connective tissue disorder). I bruised easily, had fainting episodes, gastro issues, and I felt like I got injured and tired way easier than most people.
On October 30, 2013 my pain took a turn for the worst. I had a major pelvic floor muscle spasm after sexual activity. When my muscles were done spasming, the entire left side of my vulva was over sensitized and in pain. Every touch on the skin surface would irritate the sensations. Over time, the sensations turned into stinging, stabbing, shooting pain on the left side of my vulva and pelvis that extended all the way to my tailbone area. I also felt deep gluteal sensations/pain. Pretty shortly after the episode I discovered the terms “pudendal neuralgia” and “pudendal nerve entrapment”. I had a good idea that I had a nerve entrapment immediately after it happened. I have experienced pain before but not anything quite this neuropathic in nature. My medical journey would be long from over. Doctors said a nerve entrapment is way too rare to actually happen to someone so that couldn’t possibly be it. I would spend the next 7 years building my resume to prove them wrong.
Most doctors didn’t know what to do with PN patients other than send them to pelvic floor physical therapy and tell them to try lifestyle changes. I did pelvic floor PT for years and they gave me great information and education, but the pain persisted. I ruled things out and had tons of imaging testing done. I had my first pudendal nerve block under xray guidance in 2015. I had pelvic floor trigger point injections. I had other nerve blocks done in other areas. The proper areas were numbed, but after 24 hours the pain would be back. Then I had pelvic floor botox done in 2019. That helped a little bit but the pain got worse after the 3 month mark when the botox wore off. After trying nearly all conservative treatments (blocks, lifestyle changes, PT, acupuncture, diet changes, etc) it was time to consider something more serious.
In early 2019, I was seriously considering pudendal nerve decompression surgery. When I firstcame across PNE (pudendal nerve entrapment) in 2013 online, I found one of the best surgeons in the US, Dr. Michael Hibner. I had to do my own research and book an appointment myself. In Nov 2019 I met him for the first time in Phoenix, AZ. He only takes people for surgery that he thinks will have the greatest probability for a successful outcome. I didn’t know if I would meet what he thinks would be a good candidate for surgery. But I did! Since I had one sided pain, had a clear cut event that triggered the pain, and I responded positively to nerve blocks, this made me a perfect candidate in his eyes. Still, this surgery is controversial and does not guarantee any outcome of relief. I planned to have surgery in Feb 2020, but I had to reschedule for March 12, 2020. I almost didn’t get to have surgery because of the COVID 19 lockdowns. I was the last patient Dr. Hibner was able to take before the lockdowns started happening and he moved to his own practice in Scottsdale, AZ.
Dr. Hibner used the transgluteal approach which is more invasive but gets much more of the nerve. This involves severing the Sacrotuberous ligament and repairing it. Surgery was supposed to take 3 hours, it ended up taking 4.5 hours. Dr. Hibner told my parents that there was a lot of scar tissue around the pudendal nerve. My nerve was entrapped around the Sacrospinous and Sacrotuberous ligament, which is the most common site for entrapment.
After surgery the real work began. Dr. Hibner places a pain pump during surgery that lasts 5 to 7 days which numbs the entire area. For most people, this gives them time to fly home to recover. We stayed in an air BnB for a month after surgery because I didn’t want to be rushed home. I flew home on April 3, 2020. I was able to lay down on the plane because there were only about 20 passengers. The airport was a ghost town!
Discovering that I had Pudendal nerve entrapment was just the beginning for me. After surgery my POTS symptoms got worse. POTS (postural orthostatic tachycardia syndrome) is a type of dysautonomia. Dysautonomia is a dysfunction of the autonomic nervous system. The autonomic nervous system controls all the things you don’t think about like blood pressure, heart rate, digestion, temperature control, and more. The pudendal nerve is part of the autonomic nervous system. The pelvic floor is under autonomic control, since you don’t think about holding in your urine or stool. And when you mess with an autonomic peripheral nerve, the central nervous system freaks out and needs a lot of time to fully reset. This is what happened after my surgery. The first year after surgery was brutal. I was having major POTS flare ups as well as my nerve pain feeling worse than it did pre surgery. 6 months after surgery, I returned to pelvic floor PT. The focus on PT at this time was the area around the nerve and calming down my central nervous system. I didn’t do any internal pelvic floor work at this time. I would have gone back to pelvic PT sooner but things were up in the air because of COVID 19.
During my recovery that first year, I learned about Ehlers Danlos Syndrome. This is a genetic connective tissue disorder that causes chronic pain and issues with basically every body system. It's a spectrum disorder so some people have very severe symptoms and others don’t present in the standard/ stereotypical way and get missed for diagnosis. On my journey from 2013 till surgery, I came across someone in a facebook group that told me I should look into EDS but at the time I didn’t think I fit the presentation. I was wrong about that because we are taught that EDS has to look a certain way and I didn’t fit. However, I had mysterious issues outside of my neuropathic pain since childhood and I realized that I perfectly fit into connective tissue disorder. I even realized that I had several vascular compressions that could cause a lot of my pain including my pelvic pain. Urogynecologists that I had seen during the time didn’t mention pelvic congestion syndrome that could cause pelvic pain and irritation to the pudendal nerve. These things should have been investigated prior to decompression surgery, but I was doing the best I could with the information I had at the time. It is my mission to educate people about the prevalence of nerve entrapments and connective tissue disorders. It is extremely common. And the pudendal nerve is just one of the many nerves that can become injured and entrapped on a person with EDS. Most people do not want to talk about the pudendal nerve because talking about the pelvis and genitals is taboo. But we need to speak up about this area and teach people that there is no shame. And there is especially no shame in seeking help and raising awareness.
By year 2 after surgery, I was finally starting to see an improvement in my pain. During that first year, every time you use your pelvic floor after going to the bathroom, you re aggravate the pudendal nerve. This then re aggrivates the surgical area and thus the entire central nervous system causing a huge chain reaction. You can’t avoid going to the bathroom. But at the 2 year mark, my flare ups lasted less time and were 30-40% less intense than that first year. I was starting to notice improvement! You CAN heal your nerve and your central nervous system will calm down. Your brain will keep telling you that it has gotten worse and that the surgery didn’t help. But this is your brain not being re-wired yet.
I am almost 4 years post op this March of 2024. I am not 100% pain free but I am not living the life I did pre surgery. I have flare ups after some bowel movements or sexual activity but the flares don’t last as long and they are way more manageable. I also left myself some options for treatment after surgery in case surgery didn’t work for me. This include a spinal cord stimulator, and nerve ablation. My quality of life in terms of the nerve pain have improved, so I don’t need to consider these options.
Surgery is considered a success if you feel any improvement in your pain levels. You should not expect to be pain free after surgery. 2/3rds of patients that undergo surgery with Hibner report that their pain has improved 3- 24 months post op.
Surgery is a long and grueling recovery. But healing is possible. You will not be able to work a full time job while recovering from surgery, so I suggest fighting for disability beforehand (it will take a lawyer) or move in with supportive family members where you won’t have to worry financially while you recover. You will have to come up with a new normal for yourself. You won’t be the person you were before surgery. You will go through a grieving process of your former self. This is one of the hardest part, the mental aspects. Your brain tells you that the pain will never end after being in pain nearly a decade. It tells you that you will never have a normal sex life or even a normal life period. But you can re-define what normal looks like.