Surgery Success Story in Pudendal Decompression Surgery

Hey Everyone! I am 4 years post op from Pudendal Nerve Decompression surgery. In honor of my 4 year post op celebration, I was asked to type out my success story for the pudendal association.

https://www.pudendalassociation.org/success-stories

My Name is Dylanne (Dillion)…. 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 of Interstitial 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 first came 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 aggravates 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.

Last updated March 21, 2024